November 2007

About us

The National Autistic Society (NAS) is the UK's leading charity for people affected by autism. We have over 18,000 members, 80 branches and provide:

  • Information, advice, advocacy, training and support for individuals and their families
  • Information and training for health, education and other professionals working with people with autism and their families
  • Specialist residential, supported living, outreach and day services for adults
  • Specialist schools and education outreach services for children
  • Out-of-school services for children and young people
  • Employment training and support and social programmes for adults with autism.

A local charity with a national presence, we campaign and lobby for lasting positive change for those affected by autism in England, Wales, Scotland and Northern Ireland.

What is an autism spectrum disorder (ASD)?

ASD is a lifelong developmental disability that affects the way a person communicates with, and relates to, other people. It also affects how people make sense of the world around them. It is a spectrum condition, which means that, while all people with an ASD share three main areas of difficulty, their condition will affect them in different ways. The three main areas of difficulty (sometimes known as the 'triad of impairments'(1)) are:

  • Difficulty with social interaction. This includes recognising and understanding other peoples feelings and managing their own.  Not understanding how to interact with other people can make it hard to form friendships.
  • Difficulty with social communication. This includes using and understanding verbal and non-verbal language, such as gestures, facial expressions and tone of voice.
  • Difficulty with social imagination. This includes the ability to understand and predict other peoples intentions and behaviour and to imagine situations outside of their own routine. This can be accompanied by a narrow repetitive range of activities.


The term ASD covers people from across the spectrum, including those with Asperger syndrome and High Functioning Autism. Some people with an ASD are able to live relatively independent lives but others may need a lifetime of specialist support. People with an ASD often experience some form of sensory sensitivity or under-sensitivity, for example to sounds touch, tastes, smells, light or colours. 

Over 500,000 people in the UK have an ASD. Together with their families they make up over two million people whose lives are touched by autism every single day.

The Deprivation of Liberty Safeguards

We welcome the opportunity to respond to the deprivation of liberty code of practice.

General

We believe as a whole that the code has been clearly drafted and that this will aid the implementation of the deprivation of liberty safeguards. We also support the consultative way in which the draft has been produced.

Scenarios

We very much welcome the two case studies that explicitly relate to people with autism. As a small drafting point, we would suggest that in the scenario relating to John, the words he is autistic are changed to he has autism.

Introduction

The section on 'what does 'lack capacity' mean?' could be expanded to provide more detail on this issue. It would also be helpful to clarify throughout the document that 'lacks capacity' should be seen in relation to a particular issue.

Specific comments

Chapter one: what are the deprivation of liberty safeguards and why were they introduced?

Paragraph 1.5: the clear statement that action taken under the deprivation of liberty safeguards must be in line with the principles of the act is an essential part of the code and we support the emphasis given to this section, and the ongoing emphasis upon best interests.

Paragraph 1.7: When this paragraph states "this means that deprivation of liberty must not be used as a form of punishment", it would be useful to add to the end of this sentence: "or for the convenience of professionals, carers or any other person".

Chapter two: what is deprivation of liberty?

Providing as detailed as possible an explanation as to what deprivation of liberty is, is an essential part of the Code.  This information should be updated over time if and when more information as to the definition of deprivation of liberty is known. Paragraph 2.25: including practical steps to reduce the risk of deprivation is essential and we support this.  The second bullet "all decisions about whether a person should be deprived of their liberty must be in line with the five principles of the Act and the requirements for establishing what is in someone's best interests", is a critical point, but depriving someone of their liberty in line with the five principles would not in itself be a step to reduce the risk of deprivation of liberty. In relation to the penultimate bullet point, examples should be given as to when it is not in the person's best interests to keep in contact with their family. Information should also be provided to families about how they can appeal this decision.

Chapter 3: how and when can deprivation of liberty be authorised?

Paragraph 3.1.  when this paragraph states: "if a healthcare professional or social care professional considers, for example, as a result of a care review or needs assessment, that an application for authorisation should be made...". It should be clear in the guidance that an application does not just have to be linked to a specific review and could also be at time at which it is suspected that a deprivation of liberty might be happening.

Paragraph 3.3:  in relation to the sentence: a managing authority must request a standard authorisation when it appears likely that either currently or at some point in the future....". Greater clarification on this point would be helpful as later in the paragraph the implication is that if someone was currently being deprived of their liberty without authorisation the care home should apply for an urgent authorisation, instead of a standard authorisation.

Paragraph 3.9: HL lived with paid carers.  From the drafting in this paragraph it would seem in this type of situation that an Independent Mental Capacity Advocate (IMCA) would be appointed. Paragraph 3.8 is clear that a best interests assessor should speak to people engaged in caring for the relevant person, however, it is not clear from the code that this also applies when an IMCA is appointed. It should be clearly stated that there is an expectation for the IMCA to consult with people engaged in caring for the relevant person or engaged in their welfare (in HL's case, his carers), as well as the best interests assessor.

Paragraph 3.11: it would help to give examples as to what the nature of these doubts about proceeding with the request might be.

Paragraph 3.13: it would be useful to give examples as to how far in advance is too far.

Paragraph 3.15: in relation to equivalent assessments- is it possible to have an equivalent best interests assessment? The nature of best interests assessment implies that it is in relation to the person here and now, and not at some point in the past. We believe there should be further consideration given to whether it's possible to have an equivalent best interests assessment.

Paragraph 3.17: it would be helpful to give examples of what the exceptional circumstances are that would allow an additional seven days of an urgent authorisation.

Paragraph 3.19: we support the reference to potential assessors having experience of working with the service user group from which the person assessed comes. Additional examples could be given here, such as experience of working with people with a learning disability and/or autism.

Paragraph 3.25: As stated in relation to paragraph 3, it would be useful to clarify here that IMCAs should consult with those engaged in providing care or treatment for the relevant person.

IMCAs: IMCAs should be experienced in working with the user group from which the person they are representing is from. This is vital and should be clear in the code.  

Page 33: the flowchart could expand on what should happen when the "request for authorisation is declined", particularly if this is an urgent authorisation situation and a person is already being deprived of their liberty.

Paragraph 3.44: the third bullet point- experience relevant to the person's condition, cultural factors and skills in addressing particular communication needs are all relevant factors and the wording here should be strengthened.

Paragraph 3.45: it might be worth restating here the checklist of factors that needs to be taken into account in determining best interests, rather than just referring back to the main Code.

Paragraph 3.63: this paragraph suggests that a patient may appear to be objecting but that that might not be the case. The phrasing of this paragraph could potentially give a remit to disregard an objection.  More safeguards should be placed around the potential to disregard an objection.

Paragraph 3.97: it would be helpful to provide the supervisory body with guidance as to how long the supervisory body should wait before alerting the inspection body to any doubts about deprivation of liberty.

Urgent authorisations: we welcome the strengthening of the language around consulting families and carers in urgent authorisation situations and the need to record this consultation. We are aware, however, that the carers of HL remain concerned that the protections in these circumstances are not sufficient and we hope that HL's carers will continue to be consulted during the process of finalising the Code.

Paragraphs 3.106 and 3.107:  we welcome the clear statement that the views of family, friends and carers should be recorded in the persons records and that the person from the managing authority making the decision needs to be able to show they have made a reasonable decision, it's not clear, however, who (if anyone) will hold the person from the managing authority accountable for their decision. This could be expanded on in the final version of the code.

Chapter 4: What is the role of the relevant person's representative?

Paragraph 4.26: the managing authority should have a stronger requirement to inform the supervisory body if the representative does not maintain contact with the person, rather than in the current which says "the managing authority will need to consider informing the supervisory body...". Greater guidance should also be given to managing authorities as to when the level of contact with a person is not sufficient.

Paragraph 4.28: if the representative informs the supervisory body that they are no longer able or willing to continue in the role, but does not do so in writing, what would the procedure be?

Chapter 6: What happens is someone thinks a person is being deprived of their liberty without authorisation?

paragraph 6.11: we would suggest that the words underlined are added to the first sentence in this paragraph: "if the managing authority, having considered what could be done to prevent the individual from being deprived of their liberty, decides that the care regime...".
 
Mental Capacity Regulations:

Regulation 3 (c) should include a requirement to have experience working with the service user group from which the person who is being assessed comes from.

Reference

1. Wing, L. and Gould, J. (1979) Severe impairments of social interaction and associated abnormalities in children: epidemiology and classification. Journal of Autism and Developmental Disorders, Vol. 9(1), pp. 11-29