Response to the Law Commission consultation – Mental Capacity and Deprivation of Liberty

The deadline for responses to the Law Commission’s epic consultation on Mental Capacity and Deprivation of Liberty is this Monday, 2 November. The consultation document puts forward a well-considered new scheme which in my view would be a massive improvement on the mess the current law is in in this area. There are inevitably significant areas where the proposals need further thought, most notably in my view the reliance on the bizarre definition of ‘supported living’ in the Care Act scheme. However there is much more to welcome here than to criticise, in particular the emphasis on disabled people’s wider rights such as the rights protected under Article 8 ECHR which is integral to the proposed new scheme.

Responses to the consultation can be emailed to tim.spencer-lane@lawcommission.gsi.gov.uk. In case it helps anyone who is responding similarly close to the deadline, extracts from my draft response are pasted below – being the questions and proposals which I think are the most important and / or on which I’ve got a clear view.

If you’re a supporter of the Justice for LB campaign and the proposed #LBBill, please put in a response which shows your support for the Bill proposals which have made it into the consultation – guidance from Justice for LB here. This is a fantastic chance to see some of the #LBBill ideas get into law.

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Where I have not responded to a proposal this is because I agree with it. In particular I would emphasise my support for the proposals in chapter 12 on ‘Supported Decision-Making and Best Interests’ which in the absence of a wholesale review would go a significant way to remedying the deficiencies in the MCA scheme. The emphasis on disabled people’s rights beyond the right to liberty under Article 5 ECHR, in particular the rights protected by Article 8 ECHR, throughout the consultation is also very welcome.

Provisional proposal 2-1: The Deprivation of Liberty Safeguards should be replaced by a new system called “protective care”.

I fully agree that the Deprivation of Liberty Safeguards should be replaced, as they are not fit for purpose. I do not anticipate that the Commission will receive many, if any, responses suggesting that they should be retained. Amongst their many flaws, for me the fatal flaw is that they are restricted in their application to hospitals and care homes, setting up a two-tier system which treats disabled people differently depending on the setting in which they are deprived of their liberty, without any objective justification.

I also agree with the essential elements of the Law Commission’s proposed replacement system, subject to the caveats expressed below. However I do not agree with the proposed title of the new system, “protective care”, which is excessively paternalistic. I would prefer to see the new system given a positive title, such as “rights respecting care”.

Question 3-1: have we identified the correct principles to underpin protective care?

Yes in general, including in particular the principle that the scheme should be based in the Mental Capacity Act. However given the approach of the Supreme Court in cases such as R (SG) v Secretary of State for Work and Pensions and Mathieson v Secretary of State for Work and Pensions, it is not sufficient for the new scheme to merely be ‘supportive’ of the UN Disability Convention. The scheme has to ensure that the ECHR rights of all those affected by it are fully respected, and those rights are in turn informed by the rights in the Disability Convention and the other unincorporated Conventions. By way of example, the Optional Protocol to the Convention Against Torture (OPCAT) which has been signed and ratified by the UK is also directly relevant here to the interpretation of what is required under Article 5 ECHR, as it requires monitoring and inspection of all places of detention. The statement of intent in my view should therefore be that the new scheme will be ‘compliant with the rights protected by the European Convention on Human Rights, as informed by the UN Disability Convention and other relevant international instruments’.

Provisional proposal 4-1: the scope of protective care should include hospital, care home, supported living, shared lives and domestic accommodation?

Disagree on the detail, although not the intention to create a broad scheme. My concern is that the scheme should have the broadest possible application to avoid certain disabled people falling outside its safeguards. As set out below, the technical definition of ‘supported living’ under the Care Act 2014 scheme would exclude many disabled people living in ‘ordinary’ accommodation from the protections of the new scheme. This might be solved by the catch-all category of ‘domestic accommodation’ at least in relation to restrictive care and treatment – but in that case what benefit is served by distinguishing certain types of ‘supported living’? The scope of protective care should simply be ‘all settings where disabled people might be deprived of their liberty’, i.e. everywhere.

Further in relation to day centres, I am not convinced by the reasoning in the consultation paper at para 4.24 which suggests that any authorisation of a deprivation of liberty at a day centre would be covered by the authorisation of a deprivation at a person’s place of residence. Firstly, a day centre is likely to be run and administered completely separately from a person’s place of residence. Secondly, it is quite possible in my view that a person might be deprived of their liberty in a day centre but merely subject to restrictions on their liberty in their home – for example, the supervision and control the person experiences may be much more intense at a day centre.

Question 4-2: is the definition of supported living provided under the Care Act 2014 [sic – not 2015 as per the question] appropriate for our scheme?

The definition of ‘supported living’ under the Care Act scheme (see the consultation at para 4.19) is technical and not related to the reality of what many disabled people experience as ‘supported living’. As the consultation paper correctly notes at para 4.20, it excludes all accommodation not either adapted or intended for occupation by disabled people, however this is measured. I share all the concerns expressed by Lucy Series about this definition as reflected in the consultation paper at para 4.20. There is no benefit I can see from adopting this definition for the new scheme.

Provisional proposal 6-1: supportive care should apply where a person is living in care home, supported living or shared lives accommodation, or if a move into such accommodation is being considered.

Supportive care should apply where the state has played any role in arranging a disabled person’s accommodation, or is playing any role in a proposed move to alternative accommodation. As noted above, restricting the application of the scheme to the technical categories of accommodation created by the Care Act scheme is unhelpful and will result in disabled people who are subject to significant levels of state intervention in ‘ordinary’ housing falling outside the scope of the scheme.

I note the Law Commission’s provisional view (para 6.4) is that ‘it would be over-intrusive and an inappropriate use of public resources to require additional assessments or the formal use of an advocate or appropriate person’ where people are living in family settings or other domestic settings. However ‘supported living’ as defined in the Care Act is a ‘domestic setting’. I do not see any principled basis for adopting additional safeguards because someone happens to be living in the type of accommodation which meets the technical definition of ‘supported living’.

The only class of cases where it seems to me the imposition of ‘supportive care’ safeguards would be disproportionate in relation to disabled people who lack capacity to decide where to live would be cases where the state has played no role in the disabled person’s actual or anticipated living arrangements. In those cases, absent any safeguarding concerns or arguable breaches of the positive obligations under Article 5 and/or 8 ECHR, there will generally be no proper role for public authority involvement. That would seem to me to be a principled basis for the drawing the line in relation to ‘supportive care’, not whether the person’s actual or anticipated accommodation meets the somewhat arbitrary definition of ‘supported living’ under the Care Act scheme.

Provisional proposal 6-2: supportive care should cover people who may lack capacity as a result of an impairment of, or a disturbance in the functioning of, the mind or brain, in relation to the question whether or not they should be accommodated in particular care home, supported living or shared lives accommodation for the purpose of being given particular care or treatment.

Disagree in part. Supportive care should apply in the above way to any type of accommodation, not just those specified above. For example, it should apply if a local authority is proposing that a young disabled person should leave the family home and live in ‘ordinary’ housing which would not meet the technical Care Act definition of ‘supported living’.

Provisional proposal 6-3: a local authority should be required to undertake or arrange an assessment, or ensure that an appropriate assessment has taken place, where it appears that a person may be eligible for supportive care in care home, supported living or shared lives accommodation.

Disagree in part. The requirement to assess should not be limited to specified types of accommodation for the reasons given above. Further the requirement to undertake or arrange an assessment should also apply where one is requested by the person, an advocate, family member or friend.

Question 6-10: should local authorities and the NHS in England ever set personal budgets for disabled people living at home by reference to the cost of meeting the person’s needs in residential care?

Such a practice will almost always result in a disproportionate interference with the person’s right to respect for private life and the home under Article 8 ECHR, read with the right to independent living and community support in Article 19 of the Disability Convention.

The Care Act statutory guidance goes a significant way towards prohibiting this practice by local authorities, but there is no guidance of similar force to CCGs, so far as I am aware. As such at least two CCGs have adopted ‘maximum expenditure policies’ of this type. This should be expressly prohibited under the new scheme under the key principle of respecting rights. As the Commission is aware this proposal is central to the ‘LB Bill’ promoted by the Justice for LB campaign.

Question 6-11: should there be a duty on local authorities and the NHS, when arranging care home, supported living or shared lives accommodation for a person who lacks capacity to decide where to live:

1. to secure the most appropriate living arrangement for that person, which as far as possible reflects the person’s wishes and feelings; and
2. to seek the agreement of any donee of a Lasting Power of Attorney or deputy, or a declaration from the Court of Protection.

Yes, with the important caveat that these duties should not be restricted to those who lack capacity to decide where they live but should apply in all cases where the state is involved in determining a person’s living arrangements. A mechanism where this duty could apply to persons both with and without capacity to make the relevant decisions is set out in the draft ‘LB Bill’.

The ‘most appropriate living arrangements’ duty echoes the duty in relation to placements of looked-after children in section 22C(5) of the Children Act 1989, which was inserted by Parliament in recognition of the unacceptably poor outcomes for care leavers. Given the position of many disabled people who would benefit from this duty is equally poor when measured against all the relevant indicators there is just as much need for this kind of duty here. Consistent with my submissions above this duty should not be restricted to arrangements for care home, supported living or shared lives accommodation but should apply whenever the state is involved in making living arrangements for a disabled person.

The ‘agreement’ duty is equally important to provide a degree of independent checking of proposals put forward by the state. Although there would be obvious resource implications if the Court of Protection (or other independent body) was obliged to approve living arrangements where a person lacks capacity and has no representative, this is necessary to avoid the public authorities being able to simply railroad through the proposals it has decided upon, as appears to happen far too frequently at present. Again, this should apply whenever the state is involved in making living arrangements for a disabled person, not just in relation to proposed moves to care home, supported living or shared lives accommodation.

Question 6-12: should local authorities and the NHS be required to report annually on issues relating to living arrangements and community support, such as the number of living arrangements made and how often these arrangements were inconsistent with the person’s wishes and feelings?

The details as to how the reporting requirements would work are set out in the second draft of ‘LB Bill’. It would be important that the Secretary of State should publish reports at a national level based on this data, to allow for comparisons to be made between local areas.

Question 6-14: should the duty to make referrals for protective care be a regulatory requirement which is enforced by the Care Quality Commission, Care and Social Services Inspectorate Wales, or Healthcare Inspectorate Wales?

I can see no reason why this important duty would not form part of the regulatory and inspection regime for registered care providers.

Provisional proposal 7-1: the restrictive care and treatment scheme should apply to people who lack decision-making capacity as a result of an impairment of, or a disturbance in the functioning of, the mind or brain.

On balance, yes. Although I share the concerns of the Essex Autonomy Protect as to the compatibility of this approach with the Disability Convention, until the MCA 2005 is amended it will be necessary for the restrictive care scheme to dovetail with the approach of the MCA in this way.

Provisional proposal 7-2: a person would be eligible for safeguards if: they are moving into, or living in, a care home, or supported living arrangements or shared lives accommodation; some form of “restrictive care and treatment” is being proposed; and the person lacks capacity to consent to the care and treatment.

The trigger for the enhanced safeguards should simply be actual or anticipated restrictive care or treatment. The setting in which this care or treatment is irrelevant (with the potential exception of different treatment for hospital settings). In particular there is no principled basis for distinguishing between disabled people in ‘supported living’ as per the technical Care Act definition and other types of ‘ordinary’ housing. This is a wholly arbitrary distinction from the perspective of the disabled person, and one likely to lead to very large numbers of disputes as to whether the Care Act ‘supported living’ definition is met.

I recognise that the imposition of safeguards in cases where a disabled person is being cared for in a family home or their own home will be controversial. However in my view the interference with disabled people’s Article 8 ECHR rights is likely to be proportionate given the enhanced scheme will only apply to (1) those who lack capacity to consent to their care or treatment and (2) situations where invasive care or treatment is proposed.

Question 7-4: should the restrictive care and treatment safeguards be available to people who lack capacity to consent to their care plan, in any of the following cases:

1. the person is unable, by reason of physical or mental disability, to leave the premises, including:
   1. unable to leave without assistance
   2. able to leave without assistance but doing so causes the adult significant pain, distress or anxiety
   3. able to leave without assistance but doing so endangers or is likely to endanger the health or safety of the adult, or of others
   4. able to leave without assistance but takes significantly longer than would normally be expected
2. The person has high care needs and consequently is dependent on paid carers
3. The person has limited ability to direct their own care or to access existing safeguards?

Yes, with the following caveats in relation to each of the categories

1. Category 1 – it would seem helpful here to mirror the Care Act eligibility regulations, however care will need to be taken that local authorities do not interpret these sub-categories too restrictively.
2. ‘High’ care needs and ‘dependent’ on paid carers will need to be defined
3. Similarly, ‘limited’ ability to direct care or access safeguards will need to be defined.

Question 7-5: are there any specific forms of care and treatment that should automatically mean that the person is eligible for the restrictive care and treatment safeguards?

No. The question is not the type of care or treatment but its impact on the person, which needs to be assessed on a case by case basis.

Question 7-9: should the restrictive care and treatment assessment require a best interests assessment to determine whether receiving the proposed care or treatment is in a person’s best interests, before deciding whether it is necessary to authorise restrictive care and treatment?

Yes. It would be consistent with basing this scheme in the MCA 2005 for the primary question to be whether the proposed care or treatment is in the person’s best interests.

Question 7-10: should a person be eligible for the restrictive care and treatment scheme if restrictive care and treatment is necessary in their best interests – taking into account not just the prevention of harm to the person but also the risks to others?

Yes, so long as there is proper assessment that avoiding the risk of harm to others is in the person’s best interests – as will usually, but not always, be the case.

Question 7-12: should all significant welfare issues where there is a major disagreement be required to be decided by the Court of Protection?

All significant welfare issues should be decided by the Court of Protection, with ‘significant’ defined in the new scheme. A requirement for there to be a ‘major disagreement’ discriminates against disabled people who are (1) unable to demonstrate any disagreement with their care arrangements, (2) have no family or friends to disagree on their behalf and / or (3) have family or friends who simply acquiesce with the public authority’s proposals because they agree with them or because they are not aware of any alternatives.

I accept what is said at para 7.49 of the consultation, being that one of the benefits of the new scheme will be ‘a more proportionate approach to decision-making that does not require a court decision in every case’. As such ‘significant’ welfare issues could be defined relatively narrowly in accordance with the guidance in the case law. However depending on the presence of a ‘major disagreement’ to trigger the requirement for court involvement is unfair and discriminatory as outlined above. Indeed it may be that it is cases where everyone agrees on what is best for the disabled person that an independent check by the court is most important.

Question 7-21: should there be additional oversight of the role of the “Approved Mental Capacity Professional” and a right to request an alternative assessment?

Yes on both counts:

1. Appropriate oversight independent of the local authority will be required given the enhanced status of the AMCP role.
2. The right to request an alternative assessment should vest in the disabled person, and MCA representative or an IMCA or Care Act advocate. The alternative assessment should be carried out by an AMCP not employed by the same local authority as the first assessment.

Question 7-24: should the new scheme allow for conditions or recommendations to be made that are more restrictive of liberty than the application is asking for?

All restrictive conditions sought should be clearly set out in the application. This avoids the disabled person or those representing them being taken by surprise by further more onerous conditions imposed of their own volition by the AMCP.

Question 7-25: should there be specific sanctions for a failure to comply with a condition, and if so, what should they be?

The issue of sanctions for non-compliance with the law has been raised repeatedly in the groups working on the drafting of the ‘LB Bill’. While there has been no firm conclusion from these discussions the ideas raised include the following:

1. Referral of individual professionals to the relevant professional regulator
2. Fines for the public authority
3. Publicity – on the basis that sunlight is the best disinfectant
4. Criminal sanctions in the most serious cases.

Given the Commission’s stated desire for the new scheme to ‘secure the support of disabled people’ (consultation at para 3.2), I would suggest that specific work needs to be undertaken with disabled people and disabled people’s user-led organisations on the question of potential sanctions for non-compliance with the new scheme.

Provisional proposal 7-28: the AMCP should be able to review and vary conditions without necessarily holding a full reassessment of best interests.

In general the monitoring and reviewing role for the AMCP would seem to address some of the practical problems considered by the Court of Protection in Re NRA. However it is essential to set proper boundaries to this role. As such any variation of conditions without a full reassessment of best interests would have to be narrowly confined, if permitted at all.

Provisional proposal 7-30: the AMCP and local authority must review the care and treatment following a reasonable request by the person, a family member or carer, or an advocate or appropriate person.

A review should be triggered on any request by any of the above persons, unless perhaps a review has been undertaken recently (say within 3 months), in which case the AMCP and local authority could refuse on the basis of unreasonableness (e.g. if nothing had changed in that time). If the basis right to request a review is subject to a reasonableness qualification this will simply lead to disputes as to whether a particular request is reasonable.

Provisional proposal 7-32: cases of deprivation of liberty concerning those living in a family or domestic setting must be authorised by the AMCP and subject to the same safeguards as those provided under the restrictive care and treatment scheme.

Agree – although as per proposal 7-2 above my view is that the restrictive care and treatment scheme should apply in its entirety to all settings, including domestic settings. If it does not then at the very least there needs to be equivalent safeguards in cases where disabled people are deprived of their liberty, regardless of setting.

Question 7-36: should doctors be eligible to act as AMCAs?

It is difficult to see any principled objection to this, so long as doctors receive proper training and only carry out the best interests assessment in appropriate cases, for example when the relevant decision relates solely to proposed medical treatment. The practical concern would be whether doctors are sufficiently informed as to the social model of disability to conduct a holistic best interests assessment. It may be that it is valuable for a non-medical professional to carry out the best interests assessment in cases relating to medical treatment precisely to ensure that a wider perspective is taken. However it does not seem to me necessary or appropriate to prevent doctors from being eligible to act as AMCAs in any case.

Provisional proposal 7-37: an AMCP should be able to authorise restrictive care and treatment in urgent cases for up to 7 days, and to extend this period once for a further 7 days, pending a full assessment.

Although I recognise the need to have a process to manage truly urgent cases, I have two concerns about this proposal:

1. Is it suggested that the urgent authorisation would permit a change in living arrangements for the disabled person? If so I would question whether this would afford an appropriate level of safeguard for such a serious and potentially irreversible decision.
2. I am not clear why there should be a need for the urgent authorisation to be able to renewed after 7 days, whether for a further 7 days or at all. This would seem to go against the principle that urgent authorisation should be restricted to cases of genuine emergencies.

Provisional proposal 8-2: a person may be deprived of their liberty for up to 28 days in a hospital setting based on the report of a registered medical practitioner. A responsible clinician must be appointed and a care plan produced. Further authorisations for a deprivation of liberty would require the agreement of an AMCP?

I share the widespread concern as to this proposal. While I agree that a different scheme is required for hospital and palliative care settings this proposal places the bar far too low. As a minimum in my view:

1. The duration of an authorisation under this proposal needs to be reduced, perhaps to seven or 14 days; and
2. A second registered medical practitioner should be required to approve the deprivation other than in emergency cases.

Question 8-3: is the appointment of an advocate always appropriate in all hospital cases, or is there a need for an alternative safeguard (such as a second medical opinion)?

An advocate is always necessary and appropriate in these cases. A second medical opinion would not begin to fulfil the same functions as an advocate.

Question 9-3: should the appropriate person have similar rights to advocates under the Care Act to access a person’s medical records?

Yes. If there is a situation where the person should not access the medical records for any reason then they are plainly not ‘appropriate’ and an advocate should be appointed.

Question 9-4: should Independent Mental Health Advocacy be replaced by a system of Care Act advocacy and appropriate persons?

Although the views of current users of mental health advocacy would need to be given great weight in deciding this question, my provisional view would be yes – on the basis that a single streamlined advocacy and appropriate persons system would be easier to understand and easier to enforce as a right.

Question 11-3: which types of cases might be considered generally to be of “particular significance to the person concerned” for the purposes of the right to appeal against the decision of the First-tier Tribunal?

I do not agree that the appeal right (which in my view should be to the Upper Tribunal) should be restricted in relation to factual disputes to cases which are of “particular significance to the person concerned”. The test should be instead to the effect that there is a significant dispute of fact which may have made a material difference to the outcome of the appeal. This test should be applied by the Upper Tribunal on a case-by-case basis. All cases of restrictive care or treatment will be of “particular significance to the person concerned”, so properly interpreted the proposed filter would have no impact. If it was interpreted restrictively, particularly against a pre-determined list of circumstances, the proposed filter would deny a second hearing to cases which may be felt by the person concerned to matter greatly to them.

I would also observe here (as there does not appear to be another obvious place to address the issue) that serious medical treatment and significant welfare decisions should continue to be determined by the Court of Protection. In those cases the Court of Protection should also be able to discharge the Tribunal review functions in relation to restrictive care and treatment generally to avoid the need for a separate review by the Tribunal.

Question 11-6: how might the First-tier Tribunal secure greater efficiencies – for example, should paper reviews or single member tribunals be used for relatively straightforward cases?

I would have no objection to the use of single member tribunals. However in relation to paper reviews, in my view the decision of Charles J in Re NRA is wrong and an oral hearing is required in every case, at least on the first occasion, this requirement stemming both from common law fairness and Articles 6 and 8 ECHR. I would therefore strongly suggest that the Law Commission should not propose any process whereby appeals against restrictive care or treatment decisions could be determined on the papers. The suggestion that any of these cases will be “relatively straightforward” is dangerous given the importance of the issues at stake for a disabled person who lacks capacity to consent to the relevant care or treatment.

Question 11-7: what particular difficulties arise in court cases that raise both public and private law issues, and can changes to the law help to address these difficulties?

The primary difficulty at present, as noted in the consultation, is the inability of the Court of Protection to compel public authorities to act in accordance with their statutory and common law duties. This could be remedied to a limited extent if appeals against restrictive care or treatment decisions went to the Upper Tribunal which can exercise a judicial review jurisdiction. Consideration may need to be given to whether an appeal could go directly to the Upper Tribunal in a case which raises public law issues.

Question 11-8: should protective care provide for greater use of mediation and, if so, at what stage?

I would be concerned about the widespread use of mediation in cases which engage the fundamental rights of people who lack capacity to consent to their own care or treatment. In such cases the court or tribunal plays a vital role in imposing an independent check on the arrangements. I would not favour the extension of mediation in this area.

Question 11-9: what are the key issues for legal aid as a result of our reforms?

The key issue will be the extension of non-means-tested legal aid to anyone who is appealing a restrictive care or treatment decision. The current position, whereby non-means-tested legal aid is only available to those challenging deprivations of liberty in hospitals and care homes, is in my view absurd and gives rise to a breach of the non-discrimination provisions in Article 14 ECHR. This must be remedied for the new scheme to operate effectively.

Question 13-3: how (if at all) should the law promote greater use of advance decision-making?

In my view the real issue with advance decision-making is not any deficiencies in the legal scheme but the lack of any awareness amongst the general public as to its importance. The remedy is not therefore law reform but a large-scale public awareness campaign.

Question 15-2: is the concept of the zone of parental responsibility appropriate in practice when applied to 16 and 17 year olds who lack capacity.

16 and 17 year olds who lack capacity fall within the scope of the MCA. As such the zone of parental responsibility has little if any relevance for this group. It certainly should not be relied upon to justify taking any significant decisions for a 16 or 17 year old who cannot decide for themselves.

As the consultation paper correctly notes at para 15.10 it is also of limited utility in relation to younger children given that the ‘scope of parental responsibility’ is so poorly defined. I accept however that, given the need to locate the new scheme within the MCA 2005, the position of younger children is outside its scope.

Question 15-5: should a new criminal offence of unlawful deprivation of liberty be introduced?

Although proposed new criminal offences should always be approached with caution, the consultation does appear to have identified a genuine lacuna in the criminal law which ought to be filled.

Proposal 15-6: the Criminal Justice Act 2009 should be amended to provide that inquests are only necessary into deaths of people subject to the restrictive care and treatment scheme where the coroner is satisfied that they were deprived of their liberty at the time of their death and that there is a duty under article 2 to investigate the circumstances of that individual’s death.

The duty to carry out an interest should apply at least to all cases where the person is subject to the restrictive care and treatment scheme and is deprived of their liberty at the time of their death. Consideration should be given to extending the inquest duty to all cases where the person is subject to the restrictive care and treatment scheme, given that by definition they will have been subject to intrusive care or treatment by the state or its agents at the time of their death. There is no warrant for restricting the inquest duty solely to Article 2 ECHR cases – not least because (as in the recent inquest into the death of Connor Sparrowhawk, ‘LB’) the state agencies will often dispute that Article 2 is engaged.

Question 15-9: should people be charged for their accommodation when they are being deprived of their liberty in their best interests – and are there any realistic ways of dealing with the resource consequences if they are not charged?

The second part of this question is a matter for the relevant public authorities. On the question of principle, it is important to note that the care provided to disabled people in accordance with the National Framework for NHS-funded Continuing Healthcare is also provided free of charge. I agree with the suggestion that charging those deprived of their liberty by the state for their accommodation is unfair, essentially for the reasons given in the consultation paper – including the appropriate comparator in such cases.

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:

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4. Does the framework adequately define the scope of children and young people’s continuing care?

No.

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 [2005] 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.

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5. Does the Framework set out a clear process?

No.

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.

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10. Does the framework explain how the Education, Health and Care plan process relates to the continuing care process?

No.

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.