4 years on from the Winterbourne scandal and what change ?
This week, two years on from the Government’s pledge and almost four years after the Winterbourne scandal was exposed, a report by the National Audit Office has revealed that ministers have failed to honour the pledge, with 2,600 patients with learning difficulties remaining in mental health hospitals in England. Whilst the task of moving vulnerable adults out of hospitals and into the community undoubtedly presents a very significant challenge, it is nonetheless deeply disappointing that such little progress has been made, and that disabled people and their families are still waiting.
This abject failing once again raises serious questions about the systems that we have in place for protecting some of society’s most vulnerable people, many of whom have been placed in entirely unsuitable residential units miles away from home, with little or no choice as to how they should be looked after. Indeed, the NAO has itself suggested that, in the absence of major systemic change, the government’s original targets are unlikely to ever be achieved.
One option, and indeed an option that I anticipate many of us would support, is a change to our mental health laws. Lawyers at Leigh Day specialising in abuse and human rights law were fortunate last year to meet some of the campaigners behind the ‘Laughing Boy Bill’; the seemingly straightforward aims of which are (1) to grant disabled people the right to be cared for in the community, and (2) to place their wishes and choices, and those of their families, at the heart of the decision making process.
Impetus for the Bill first arose following the death of Connor Sparrowhawk, who tragically drowned in a bath at an NHS Assessment and Treatment Unit after he suffered an epileptic seizure in 2013. Connor had autism, epilepsy, and a learning difficulty, and was 18 when he died; a subsequent inquiry by the responsible Trust found that his death was entirely preventable.
Unfortunately, Connor’s death is not the only isolated incident of this nature; indeed research has shown that people with learning disabilities who are placed in assessment and treatment units are more vulnerable to over-medication, restraint and injury. The grave concerns over the suitability and safety of such units have led to calls by Mencap and The Challenging Behaviour Foundation for there to be a planned closure programme; a move that we fully endorse, not least because it will finally provide the incentive for mental health commissioners and local providers to work creatively to develop local alternatives.
The first draft of the Laughing Boy Bill is currently under consultation, and we are expecting a second draft imminently. It contains a number of interesting clauses relating to the provision of mental health services by Local Authorities and NHS bodies, perhaps the most significant of which are – in outline – as follows:
1. That due regard must be had to the need for disabled people to be fully included in their community;
2. That in securing new living arrangements for a disabled person, the most appropriate arrangements available for that person must be secured, having specific regard to:
- Their wishes, feelings, and preferences as a primary consideration;
- The need to ensure they remain in or close to the local community with which they identify;
- The need to maintain links between them and their family and friends; and
- The need to support them in accessing employment, education and/or training and other activities in the community;
3. That at least every 12 months the existing living arrangements for a disabled person shall be reviewed, to ensure that they are the most appropriate available;
4. That in deciding whether to place a disabled person in any residential setting (other than under the Mental Health Act 1983) the agreement of: (i) the disabled person with capacity, or (ii) the parent of a minor, or (iii) the Court of Protection where the disabled person lacks capacity, must be sought. As well as these individuals, the disabled person; any family member involved in their care; any independent advocate acting for them; and any other person involved in their care/interested in their welfare, must generally be consulted;
5. That every local authority and NHS body shall prepare an annual (anonymised) report to the Secretary of State, including:
- The number of residential living arrangements for disabled persons over whom they have responsibility;
- Why in each case there was no more appropriate living arrangement in the community for that person;
- What plans are in place in each case to support that person to return to the community;
- The name of the person’s social worker and their discharge plan.
The Secretary of State will then be under a duty to publicly respond to these reports, including the steps that it intends to take to ensure such bodies have a sufficient supply of in-home, residential, and other support services.
The Bill also aims to introduce some important amendments to existing mental health laws, these being:
1. That people with learning disabilities and autistic spectrum disorder should be removed from the scope of the Mental Health Act 1983, so that people can only be sectioned or otherwise treated under the Act if they also have a diagnosis of a recognised mental illness. The result of this is that someone suffering from a disability, but who does not have a mental illness, could not, for example, be detained or subjected to compulsory treatment under mental health legislation;
2. That the Mental Capacity Act 2005 be amended, so that, unless considered necessary and in the person’s best interests, no questions about a person’s capacity shall be determined unless they, and any person engaged in their care and welfare, has been consulted. The person’s present wishes, feelings and preferences must be treated as a primary consideration, and due regard must be had to the need to minimise restrictions on their rights and freedoms.
Not only do the above proposals uphold some of our most basic and fundamental values, including the need to respect a person’s dignity, bodily integrity, privacy and autonomy, they are also in accordance with Article 19 of the UN Convention of the Rights of Persons with Disabilities (CRPD), which protects the right to independent living. At present, disabled people in the UK do not have an enforceable right to independent living because, whilst we have signed up to the CRPD, its provisions have not been incorporated into domestic law through primary legislation.
The extent to which the Laughing Boy Bill could dramatically improve care and provision for people with learning disabilities cannot and should not be underestimated. This is especially so in light of recent jurisprudence from the Court of Protection, including the striking judgment in Rochdale Metropolitan Borough Council – v – KW (By her Litigation friend, Celia Walsh) & Ors  EWCOP 45 that a woman with a severe brain injury was not being restrained from exercising the freedom to leave and thus not being deprived of her liberty under A.5 ECHR – so as to engage the Deprivation of Liberty Safeguards – for the essential reason that she did not have the physical or mental ability to exercise that freedom.
Whilst this disappointing judgment (at least pending appeal) raises concerns about the extent to which people like KW will be protected by A.5, we are hopeful that the Laughing Boy Bill, if enacted into law, could offer protection for people in her situation, including the absolutely fundamental requirement for there to be an annual review of a disabled persons living arrangements.
This week’s news, and continuing revelations about the horrific abuse that many of our most vulnerable clients have suffered in institutional settings, illustrates once again the pressing need for both legal and systemic change. We await the second draft of the Bill, and in the meantime continue to offer our wholehearted support to the Laughing Boy Campaign and hope that many others will follow suit.