Joint Committee on the Draft Mental Incapacity Bill Written Evidence

131.Memorandum from the National Autistic Society (MIB 1061)


  1.  The National Autistic Society (NAS) is the leading charity for people with autism spectrum disorders (ASD) in the UK. It has a membership of over 12,000, a network of 60 branches, and 60 affiliated organisations in the autism field. The NAS exists to champion the rights and interests of all people with autism spectrum disorders and to ensure that they and their families receive quality services, appropriate to their needs. There are approximately 520,000 people with autism spectrum disorders in the UK.

  2.  The NAS welcomes the opportunity to comment on the draft Mental Incapacity Bill. However, we would urge the Committee to recommend that the title should be changes to the Mental Capacity Bill. This would underpin the underlying principle of the Bill that there is a presumption of capacity unless it is established that the person lacks capacity.

  3.  The NAS is a core member of the Making Decisions Alliance (MDA), a consortium of 27 organisations and groups working with people who may have difficulty making or communicating decisions. The NAS mirrors the views of the MDA on the draft Mental Incapacity Bill but would also add the following commentary that relates specifically to adults with autistic spectrum disorders (ASD).


Lack of Capacity relates to each decision to be taken

  4.  The NAS agrees that the starting point should always be that the person has capacity and the Bill states that "all practicable steps" must be taken to help the person make the decision before they can be regarded as lacking the capacity to make that decision (Clauses 2,3). It is particularly true that adults with ASD are able to make some decisions but not others; therefore it is important that each decision should be addressed on the person's capacity to make a decision on a matter at that point in time.

  5.  Difficulties may arise in assessing the capacity of adults with autism because of the nature of the communication impairments associated with the condition. Some people with autistic spectrum disorder have an average or above average IQ level but because of their autism still have enormous difficulties with communicating their needs and wishes. Therefore, it is essential that any assessment of capacity must include a professional with the knowledge and experience of autism spectrum disorders, including, where relevant, language/communication professionals, psychiatrists and clinical psychologists should a dispute requiring court intervention arise.


Single Orders of the Court

  6.  The NAS welcomes the concept of Single Orders of the Court within the Bill. Although Single Orders of the Court may be deemed an extra bureaucratic hurdle to overcome they can also act as a an acceptable meeting point between acting too loosely under the General Authority and applying to become a Court Appointed Deputy (see below).

The New Court of Protection

  7.  The scope and influence of the new Court of Protection will help to build and maintain expertise in matters arising to adults with impaired capacity. The NAS are also looking for a commitment that all those working for the Court will build up expertise in autism, so that evidence presented as to whether a person with an autistic spectrum disorder lacks capacity can be effectively evaluated.


  8.  The NAS has reservations about the scope of the General Authority. A primary concern is that the General Authority may undermine the presumption of capacity set out in Section 3 of the Bill. Fluctuating capacity is particularly relevant in adults with ASD depending on their physical environment, mood and control of a specific situation. It is therefore paramount that "all practicable steps" are taken to ensure that a person can understand and make a decision including waiting until the person is calm and able to communicate their wishes. The General Authority must take fluctuating capacity into consideration and respect the presumption that many adults with ASD are able to make decisions, both with and without support.

  9.  Given the difficulties in accurately assessing capacity for adults with ASD the NAS believes that greater checks on the application of the General Authority will be necessary. In particular, the Scrutiny Committee should ask the Government to clarify on the face of the Bill that carers who expect to take a wide range of decisions across an indefinite period should have it noted (eg in a care plan, at a case conference or review) that decisions were being made under the General Authority.


  10.  The NAS is concerned that the Court of Protection should only appoint a Deputy when an independent assessment of capacity (including an autism expert) to take a particular decision has been made. Also, the appointment of a Deputy is a key moment when we believe a right to access independent advocacy should be triggered.



  12.  The NAS strongly supports the MDA's call for appointeeships to be included in the Bill. A large percentage of adults with autistic spectrum disorders receive state benefits and as the Bill sets out to safeguard adults with impaired capacity the NAS believes that appointees should be required to act in a person's best interests when considering how financial affairs are handled.

Advocacy—the need for supported decision-making

  13.  The publication of the Mental Incapacity Bill is an ideal opportunity for the Government to fund advocacy support for adults with complex communication disorders such as ASD in order to support them to make decisions. The NAS believes that the involvement of an independent advocate should be regarded as standard practice when a carer is seeking to demonstrate that "all practicable steps" have been taken to help a person make their own decision (clause 2).

  14.  Expanding the capacity of independent advocacy organisations to work with people with ASD will be necessary to make this a reality. It is clear despite Valuing People[135]adults with ASD are still missing out on advocacy support. Adults with ASD would benefit from advocacy support with housing, assistance in the transition to adult services, employment, assistance with social integration and access to health services.

  15.   Autism: Rights in Reality (2003)[136] found that only 11% of adults with ASD had ever used an independent advocate, despite the majority wanting to access this support. Carers often play an important part in supporting people with ASD but continuing reliance on their families may inhibit independence. This is why access to advocacy can be important in supporting people with autism to have a greater degree of independence.

  16.  Advocates for adults with ASD can be involved to support decision-making because of the difficulties of communication, choice and expressing their wishes experienced by this group. It is sometimes the case that advocates may only be able support a few people with ASD at any one time. Therefore, the proposals in the draft Mental Health Bill for paid casework advocates to support a number of clients would be unlikely to benefit adults with ASD if applied to this Bill. It also important to emphasise how vital it is for advocates to fully understand the communication difficulties and all other aspects of autistic spectrum disorders in order to advocate successfully for an adult with ASD. However, the benefits of involving an advocate, both in terms of quality of life and the financial savings that may result from continuing independence can be substantial.

  17.  The NAS urges the Department for Constitutional Affairs, Department of Health and local authorities to work together in order to fund independent advocacy organisations to include people with ASD within their client group.

August 2003

135   Broach S. et al (2003) Autism: Rights in Reality. London: National Autistic Society. Back

136   Department of Health (2001) Valuing People: a new strategy for learning disability for the 21st Century. London: Department of Health. Back

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