The health / social care divide for disabled children – consultation on draft National Framework for continuing care
If the dividing line between local authority and NHS responsibilities for meeting the needs of disabled adults is hard to find, the line for disabled children is practically invisible. In my experience this can cause real problems as agencies argue about who is responsible for meeting severely disabled children’s needs. Alternatively it may result in one agency (usually the local authority) taking on responsibilities which go beyond its legal duties or powers.
Since 2010 we have had a National Framework in place for children and young people’s continuing care. This sets out the point at which the NHS should take lead responsibility for meeting disabled children’s needs and the process by which packages of support should be put together – although troublingly it is merely guidance and has no express legal force.
The Department of Health is currently consulting on a revised draft Framework. The consultation closes next Friday, 23 October 2015 (very precisely, at 11.45pm that day). I would urge everyone who is concerned to see that the needs of the most severely disabled children are properly met to engage with the consultation and comment on the draft. There doesn’t appear to be an Easy Read version of the consultation which is an issue that people may want to take up with the Department.
From my perspective I’m concerned that the draft Framework doesn’t properly address the health / social care dividing line. It seems to assume that in every case there will be a mixed package of care – but some disabled children have care needs which are the sole responsibility of the NHS following the Haringey judgment.
There are several other concerns I have with the draft Framework, not least the focus on children who have Education, Health and Care Plans which will only be a small minority of disabled children, and far from all those who are eligible for continuing care. All these concerns are summarised in my response to the consultation – I’ve pasted sections of this below in case it helps others who are yet to respond.
There are some very good things about the draft Framework – not least the clear statement at para 21 that ‘A decision on the package of continuing care that may be provided should not be budget or finance-led: the primary consideration should be supporting the child or young person’s assessed needs and outcomes’. I hope the Department will make the necessary amendments to the draft Framework and issue a new final Framework as quickly as possible. The current Framework from 2010 is no longer fit for purpose in the light of the massive change in NHS structures and processes since that date.
These are the key parts of my response to the consultation:
4. Does the framework adequately define the scope of children and young people’s continuing care?
The draft Framework begins at para 1, p6 by defining continuing care by reference to cases where a child has ‘complex needs which cannot be met from the health services routinely commissioned by clinical commissioning groups (CCGs) or NHS England’.
The problem with this approach is that it ignores the complex issue of the dividing line between local authority and NHS responsibilities for disabled children with complex needs. The sole focus on whether the child’s needs are such that they cannot be met from universal health services obscures what is often a very important issue, being whether the responsibility for meeting those needs falls to the local authority or the NHS body (normally the CCG).
The current Framework (2010) contains (at Annex D) a summary of the leading case on this issue, being R (T, D and B) v Haringey LBC and Haringey Teaching PCT  EWHC 2235 (Admin). There is guidance in the 2010 Framework that ‘PCTs and local authorities should take into account this piece of case law in their processes for deciding on and putting in place packages of continuing care.’ On p9 of the 2010 Framework, it is said that the Haringey judgment ‘determined that the Coughlan criteria, used to determine whether a local authority or a primary care trust should provide required services to an adult in need of NHS continuing care, applied equally to children.’ However there is no mention of the Haringey judgment in the current draft Framework. This is in my view a surprising and unhelpful omission, as a key function of guidance must be to distil the principles from complex case law into useful advice for professionals.
In my view the key question determined by in the Haringey judgment is the limit of the scope of local authority responsibilities for disabled children. The High Court held (para 68) that it was not permissible for the broad duty in section 17 of the Children Act 1989 to extend to meeting ‘essentially medical needs’. This would turn local authorities into a ‘substitute or additional NHS for children’ which was an ‘impermissibly wide interpretation, creating obligations on a social services authority which are far too broad in the context of other statutory bodies and provisions covering the needs of children’.
As such there is clearly a line across which local authorities must not provide services for disabled children, and the responsibility for providing those services falls solely on the NHS. However it is entirely unclear from the current draft Framework where the Department considers that line to lie. What is said at para 8, p7 is that ‘Where appropriate, continuing care should be part of a wider package of care, agreed and delivered by collaboration between health, education and social care’. Similarly at para 27, p9 it is said that ‘a child…with continuing care needs may require services commissioned by the local authority’.
In my view the Framework needs to give guidance as to when this is appropriate and when the needs should be met solely by the CCG or NHS England. At the very least reference needs to be made to para 68 of the Haringey judgment and the touchstone that the local authority must not act as a ‘substitute or additional NHS for children’. Consideration should be given to including an updated version of the summary of the Haringey judgment in Annex D to the 2010 Framework as an annex to the updated Framework.
5. Does the Framework set out a clear process?
The process for determining eligibility for children’s continuing care remains relatively clear – although serious concerns remain that this process has no statutory force as the Framework will not (as I understand it) be backed by directions.
However what is unclear is the relationship between the Framework and the reformed scheme for meeting the wider needs of children with special educational needs and disabled children introduced by Part 3 of the Children and Families Act 2014. In particular there appears to be an assumption that children who are eligible for continuing care will have an Education, Health and Care (EHC) Plan – see para 2 of the Executive Summary on p5.
The test for an EHC Plan to be issued is that it is ‘it is necessary for special educational provision to be made for a child or young person in accordance with an EHC plan’; section 37(1) CFA 2014. As such it is only those children with significant special education needs who will benefit from a new joined-up plan – no matter how complex their health needs may be.
It is therefore essential that the Framework gives guidance on how the Department anticipates that children’s health, educational and care needs are co-ordinated in cases where the child is eligible for continuing care but not eligible for an EHC Plan. This should include more detailed reference to the duty (mentioned at para 40, p11 of the draft Framework) under section 26 CFA 2014 to have in place joint commissioning arrangements for all disabled children and children with SEN, not just those with EHC plans.
10. Does the framework explain how the Education, Health and Care plan process relates to the continuing care process?
Firstly, it does not deal with the situation where a child has complex health needs and some special educational needs, but not a sufficient level of special educational needs to require an EHC Plan to be in place – see answer to question 5 above.
Secondly, the guidance at paras 44-49, p12 is unclear in several important respects:
- If it is not of benefit to ‘completely integrate’ the EHC plan assessment and the continuing care assessment given the wildly different timeframes for these processes (para 45), how should the two processes inter-relate?
- At para 46 it is said that the ‘health assessor’ is responsible for ‘social care and health input to the co-ordinated process’. However for EHC assessments the social care input is the responsibility of the local authority under regulation 6(1)(3) of the SEN and Disability Regulations 2014.
- The suggestion at para 48 is that because the new SEND arrangements extend up to 25, there will be young people aged 18 or over governed by the adult Continuing Healthcare framework where ‘The local authority may not have any responsibility towards the young person’. However by virtue of the SEND arrangements continuing to apply the local authority will still have responsibility for securing the special educational provision in the EHC Plan, see section 42(2) CFA 2014. It is suggested at para 48 that ‘The local authority would still take the lead in co-ordinating the EHC plan but the services they were ultimately responsible for securing would be negligible’. Is the Department suggesting that the CCG or NHS England would take on the responsibility for securing the special educational provision in those cases? This would seem to me to be a highly surprising conclusion and also plainly wrong.