Children and young people with complex needs risk being institutionalised during their teenage years and condemned to a life hidden from society, an independent review says.
These Are Our Children, which was published by the Department of Health last week, was triggered by a small number of individual cases that focused attention on the care, support and treatment provided for children with challenging behaviour and complex mental health needs.
The review by Dame Christine Lenehan, Director of the Council for Disabled Children, says that while this group of children is not ignored by government programmes the current system lacks a definitive strategy for meeting their needs and is failing to significantly improve lives.
The group the review focuses on is few in number and its members are already known to local authority services and the NHS. They have complex needs (and behaviour that challenges) involving mental health problems and learning disabilities and/or autism. Behaviour can be described as challenging ‘when it is of such an intensity, frequency or duration as to threaten the quality of life and/or the physical safety of the individual or others and is likely to lead to responses that are restrictive, aversive or result in exclusion’.
Last year it was estimated that there were 170 under-18s with learning disabilities and/or autism in inpatient care and 635 aged 18-25. Over a thousand children (1,129) were in 52-week residential schools.
The review says the costs of inpatient care and treatment for each of these children could amount to hundreds of thousands of pounds each year.
Evidence suggests that the children in this group tend to be in poorer families and live in challenging circumstances. Consequently they are disproportionately affected by cuts to local authority, community health, and children and young people’s mental health services (CYPMHS).
The review says,
This leads to a process where our group of children are escalated through tiers of services as gaps occur and the result is significant pressure on inpatient facilities and a lack of community services for children to return to.
Dame Lenehan adds:
There’s a well-worn path for this group of disabled children, away from their home communities into long-term placements that often act a last resort. Hidden and separated from the rest of society, these children become “special cases” for whom the aspirations we have for other children and young people don’t apply. We urgently need a shift in thinking, so “these” children are recognised as “our” children, as members of our communities with exactly the same rights to health and education, and family and community life.
The review starts by reasserting the rights of these children as set out in the United Nations Convention on the Rights of the Child. Many of them, it says, are ‘denied the basic rights of childhood, a loving family environment, a full education, and a right to develop and move towards adulthood within a community, whatever the right community looks like for them.’
It suggests that agencies such as the Department for Education (DfE), the Department of Health (DoH), NHS England and Public Health England, should act to ensure these universal rights are recognised and respected: ‘Otherwise we quickly retreat into deciding a new “normal”, where a different set of values apply, where what is expected for all children is not available for our children, because they are not seen as children any more but as patients, or problems to be solved.’
The review also calls for the DfE to review provision in special schools and colleges for this group of children. The DfE has already agreed to this and has commissioned Dame Lenehan to conduct this work in 2017. A call for evidence is now live on the CDC website.
The review also suggests the DoH and NHS England undertake an urgent review of the number of these young people aged 18-25 currently in inpatient provision. This, ‘should look at numbers, routes of admission and destinations to ensure this group of young people do not face a lifelong future in institutional care and we stop under-18s becoming the next adult inpatient cohort.’
While the review describes managers and clinicians as committed and enthusiastic, it found little evidence of a clearly articulated vision for the outcomes for this group of children or the service interventions needed to realise them. Such a vision needs to be developed and tested, it says, along with a model of care that is shared and supported by all agencies with cross-agency agreements on access to the service, costs and funding.
The review suggests several reasons for why this isn’t happening already:
- Fragmentation across the system, which builds inertia and breeds a lack of ownership;
- Perverse incentives that reinforce agencies to take a partial view;
- An ongoing philosophical debate about causation and treatment of challenging behaviour;
- The complexity of some children’s needs and their presentation, which means there is no easy fit when it comes to service provision;
- The late manifestation of mental health problems, which hinders early diagnosis; and
- The adoption of an ‘access at diagnosis approach’ that can exclude some of the most complex cases, where diagnosis can take significant time and where a care pathway may not be clear.
The review says there is an urgent need to get beyond a system that is dependent on diagnosis to one that starts with children’s needs and then looks at how they can best be met. There is also a specific need for clinicians, in particular, to agree ownership and working protocols for this group of children.
Recommendation 5 of the review is that the Royal College of Psychiatrists, the Royal College of Paediatrics and Child Health, and the Royal College of General Practitioners working with other relevant Royal Colleges urgently undertake discussions to clarify the responsibility of medical and other professionals for this group of children and develop national, jointly owned guidance to ensure respective roles are widely and consistently understood.
Alongside professionals the review also addresses the needs of parents. Here it recommends that each child or young person in an in-patient setting, or at risk of going into one, has a named keyworker from either health or local authority services, and that clear agreements are drawn up between the local authority in which the setting is located and the home local authority on their respective roles and responsibilities.
The review clearly hopes that the Transforming Care programme will address and resolve some of these issues, although it notes that, ‘it has struggled to gain cross-system engagement’. The programme has a children and young people’s work stream but this is in its early days. The review says a much stronger pulling together of initiatives across the system is required and this needs to be replicated at a local level. It recommends that the DoH take a lead in working with other agencies to achieve this by the end of the 2016/17 financial year.
One of the biggest challenges in doing so relates to commissioning. Specialised commissioners and Clinical Commissioning Groups (CCGs) told the review, ‘the service model for children is written but not well known or understood. There are generally poor levels of awareness of this group of children in services and it is difficult to see an effective commissioning process in practice.’
The picture that emerges is one of confusion over ‘ownership’ of this group of children, what is expected of commissioners and whether there will be sufficient funding to meet high expectations. Commissioners also expressed the view that, ‘you can’t commission a service if there is no suitable service to commission’. As the review states: ‘Services tend to be supply driven in the NHS and if there aren’t any suitable providers it is very difficult for commissioners to do their job, however good the specifications they issue.’ Some notable gaps are in early years intervention and out-of-hours provision.
The lack of out-of-hours provision for children and young people with challenging behaviour is mirrored in the inadequate geographical spread of inpatient provision, particularly for those with the most complex needs. In these circumstances where children end up can depend on factors other than where best to meet their needs. As the review states: ‘A number of our group of children end up in residential special schools as a last resort and there are real concerns about the level of professional health support available from psychiatrists, psychologists etc in that setting.’
Finally, the review says that a multi-agency approach to the workforce is key and currently lacking. Of particular importance to those working in educational settings is that there is no clear crossover between Care and Treatment Reviews (CTRs) and Education, Health and Care Plans (EHCPs). Nor is there sufficient understanding of children with mental health and learning disabilities among universal services such as the police and General Practitioners (GPs). Here the review recommends that those organisations with responsibility for workforce development should identify the skills gap in caring for these children and take action to address them.
As always, how much of this can be achieved on existing budgets is questionable. At several points in this review funding emerges as an issue of concern, be it in the context of out-of-authority placements or commissioning budgets. As one parent told the inquiry: ‘I’ve struggled to get £18,000 of care for my son in the community. I can’t get any more so he is moving to a placement costing £200,000. What happened to the middle?’
The review rightly says that given the significant costs of inpatient and residential special school provision there needs to be a clear scrutiny process in the system to ensure outcomes are delivered. Evidence suggests this is missing at present and a lack of focus and momentum means there is little if any incentive to discharge these children and young people.
As Dame Lenehan concludes:
This review has highlighted the need for stronger scrutiny of all commissioning for this group, to ensure that this group of children and young people achieve better outcomes. This is particularly crucial when large amounts of money are involved in their care. As the Director within a voluntary organisation which, rightly, is held to high scrutiny on the spending of public money, it is very difficult to see why these double standards can apply. This is particularly the case, given the vulnerability of our group of children and young people.