Five years on from the publication of the Transforming Care Agenda, can the government and the sector claim that care is being transformed in line with its objectives? Natalia Lysiuk, Head of Commissioning at Heathcotes Group, examines the challenges and the possible pathways to successful transformation.
We are now almost six years on from the Winterbourne View scandal which prompted a far-reaching review of the care sector and its practices. The conclusion of the review and the necessary reforms were outlined in the Transforming Care agenda, published in 2012. It stated a clear objective to improve services for people with learning disabilities, autism, mental health conditions and challenging behaviours with a system-wide change to facilitate transition from in-patient care. At its core is drive to enable more people to live in the community, with the right support, thereby reducing unnecessary hospital admissions and lengthy hospital stays.
Subsequent evidence of progress has been qualified at best. A report in January 2015* acknowledged the scale of the change required and recognised that, while progress has been made, too many people with learning disabilities are admitted to hospital when admission could have been avoided, too many remain in hospital too long, and instances of poor care remain too common. Its conclusions recognised that “there is much further to go.” Since then, the worsening funding crisis across the sector has made that journey more challenging. This time last year, care leaders launched a Care Crisis Manifesto warning that the Transforming Care agenda will fail unless Government provides better funding for learning disability care. Little appears to have improved in the intervening months: many treatment reviews are not being fully delivered, levels of community support for individuals is highly variable and uncertainty has arisen from potential changes to the local housing allowance.
Residential services represent a vital bridge between in-patient care and a more independent life within community-based setting. It allows a move away from a hospital environment to a residential placement whilst maintaining safety and security. It’s often attractive to families and the person themselves, but there are still concerns about potential difficulties of living with others and the levels of care that will be provided. Commissioners also have financial concerns, particularly if there is a feeling that the individual could become ‘lost in the system’ and end up in an expensive long-term placement. In actual fact residential providers could actually be reducing their support needs and working towards moving individuals on to a more independent setting. A central theme of Transforming Care is the need to empower individuals and their families in this crucial decision to transition from residential services to community-based support.
As Sir Stephen Bubb said in his 2014 report, Winterbourne View – Time for Change: “People with learning disabilities and/or autism and their families have an array of rights in law or Government policy… [but] the lived experience of people with learning disabilities and/or autism and their families is too often very different. Too often they feel powerless, their rights unclear, misunderstood or ignored.”
This point is a fundamental to successful transition and the ultimate objective of the Transforming Care agenda. However, from the point of view of a care provider in residential services, the need to engender empowerment isn’t solely about formal rights and frameworks for decisions about placement. It’s also about enabling individuals to feel empowered to make their own decisions in everyday life, down to the smallest detail. A person’s choice of what time to eat lunch may seem a minor triviality in the bigger picture, but it does in fact have wider significance: individuals with learning difficulties have often experienced more regimented routines in care contexts and, as a result, they often don’t view these kinds of decision as theirs to make. Helping them to appreciate this, and change their mind-set over time, is a vital aspect of transition. Developing the self-confidence to make those personal choices is an essential stage in the progression to more independence.
Personal empowerment is about developing confidence, but it’s also about developing skills (and the two are undoubtedly interdependent). An inappropriate residential setting can be de-skilling for individuals and hold them back from moving on with their lives. It also impacts on the benefits they can receive and further reduce their opportunity for citizenship and social inclusion. A key objective of transitional care must be to ensure that skills for daily living are taught, nurtured and encouraged. This can be facilitated with person-centred support that aims to doing things with – rather than doing things for – the service user. It helps to establish goals and outcomes for each individual. Care providers should always strive to challenge and take managed risk in pursuit of helping people to achieve their goals and aspirations.
Another key aspect of effective transition in person-centred care is a stepped reduction in support levels. For example, a service user might begin a residential placement with high levels of support to keep them safe. Whilst this may initially be necessary to assist transition into residential care, clearly it does not represent a typical circumstance for everyday life in the wider community. It therefore follows that it is ill-suited to managing the transition from residential care. If the arrangement becomes entrenched, it can become an obstacle to an individual’s confidence, learning and empowerment.
Person-centred care should maximise one-to-one support at every stage. In our experience, this dynamic is central to the transition. Desired outcomes are improved and achieved faster when the one-to-one support is consistently provided by the same carer over time, so staff retention can also be a factor in helping service users to achieve more independent living.
Heathcotes are demonstrating the value of this approach with results which, if replicated nationally, would meet the targets outlined in the Transforming Care agenda. Since the beginning of 2017, we have supported 18 people to move on positively from our services to more independent settings such as Supported Living or a private tenancy with support. We firmly believe that this helps cement our relationships with stakeholders. As a provider who supports and encourages people to move on, rather than hold them back, we have become a trusted partner to referring authorities who are working with ever decreasing budgets in their efforts to meet the requirements of the Transforming Care agenda. We are working closely with Transforming Care partnerships nationwide and have acted on recommendations to build capacity in the community in the form of small residential care services for adults with learning disabilities and associated needs such as autism, mental illness, and challenging behaviour. Heathcotes wholeheartedly supports the overall aims and objectives of the Transforming Care agenda and welcomes feedback from its Transforming Care partners.
Authorities have often perceived residential care providers as simply filling beds. Regrettably this view is sometimes adopted by the care providers themselves. It is a perception that needs to be addressed sector-wide to ensure that specialist residential care fulfils a vital role in not only transitioning people into services, but also in assisting them to transition out in support of the Transforming Care agenda.
*Transforming Care for People with Learning Disabilities – Next Steps
Produced jointly by:
Association of Directors of Adult Social Services (ADASS), Care Quality Commission (CQC), Department of Health, Health Education England (HEE), Local Government Association (LGA) and NHS England