Falling into gaps and getting stuck in traps: Post-18 transition for young people with learning difficulties
Connor Sparrowhawk, a young man of 18 with autism and epilepsy, was admitted to Slade House after he became increasingly agitated by changes as he prepared to leave school and transition into receiving adult social care services. Slade House was an Assessment and Treatment Unit/ Centre designed for short-term crisis management for people with learning disabilities; his family expected him to return soon, with the community care package he needed. 107 days after admission, however, he was dead, having drowned in the bath after suffering an epileptic attack while unsupervised.
At the inquest Connor’s death was found to be preventable, the result of a decision to reduce the frequency of his nursing observations, despite his mother having warned staff that his epilepsy was worsening. His family spoke of their hope that “the spotlight that has been shone on to the careless and inhumane treatment of learning disabled people leads to actual (and not just relentlessly talked about) change..”
Connor’s tragic death highlights at least two broader problems about gaps in both law and practice which occur when young people with learning difficulties, particularly those with complex needs and profound disabilities, turn 18 and transfer between children’s and adult social services.
The last decade has seen a great deal of legislation and guidance about how transition planning should work. Local authorities have an obligation to carry out an assessment for post-18 planning under s.58 of the Care Act 2014 “[w]here it appears to a local authority that a child is likely to have needs for care and support after becoming 18 [and] it would be of significant benefit to the child to do so.”
Having carried out this assessment, the local authority must give an indication as to what needs the child is likely to have after turning 18, and broader advice and information. It was recognized in the Winterbourne View Review that “Children and young people with challenging behaviour can face particular difficulties and crises as they move from child to adult services. Integrating care and support around their needs and ensuring that they have access to the services identified in their agreed care plan is vital.” This echoed earlier comments in multiple reports on the importance of the post-18 transition period.
Yet research consistently shows that in practice transition assessments are often either missed or carried out in a tick-box fashion which doesn’t give sufficient weight to carers’ concerns or allow time for the young person to express their own views. Mencap reports that only 6% of respondents thought there was effective planning for the transition from children’s to adult services.
This failure to make adequate assessment of post-transition needs can lead to a second problem in that community care placements break down, and so young people with challenging behaviour are sent, often far from their families, to Assessment and Treatment Centres (ATCs; also sometimes called Assessment and Treatment Units). ATCs are intended to be short-term inpatient units where individuals whose community placements have broken down can receive specialised intensive care which can equip them to return to community living. Connor Sparrowhawk’s case, the inquiry into abuse at Winterbourne View (which was an ATC), and recent testimony from medical professionals in response to 2018 NICE guidance on managing challenging behaviour, have highlighted that ATCs are often used inappropriately for much longer periods.
Repeated initiatives to move people with learning disabilities out of hospital care and into the community have failed – a December 2012 programme was found in 2014 to have moved out of hospital only 182 of the 2615 people detained and NHS England’s “Homes not Hospitals” report in 2015 promised to reduce the learning disabilities inpatient population by half in three years, yet this looks unlikely to be achieved. A statistical report by the Centre for Disability Research at Lancaster University suggested that, as increasing numbers of ATCs are now run by private providers, and CCG budgets to provide community care are stretched, financial considerations rather than clinical need increasingly determine the length of an inpatient stay.
Multiple human rights are being breached here, most obviously Articles 8 and 9 of the ECHR. Of the ten most recent complaints to the Local Government and Social Care Ombudsman by parents about transition from children’s services, eight have been upheld. The Ombudsman has been critical of poor communication by social services and injustice caused to people with learning disabilities. Yet the process of an Ombudsman complaint is a long one, and the compensation ordered by the Ombudsman cannot undo the psychological harm of prolonged separation of vulnerable people from their families and communities.
This is not something which can be remedied by another law, or yet another report. What is needed is a combination of social mobilisation, of the sort started by Connor’s mother Sara Ryan, political will to allocate realistic resources to community care, and expedited appeal procedures for those challenging long-term inpatient care.