131.Memorandum from the National Autistic
Society (MIB 1061)
OVERVIEW
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).
KEY PRINCIPLES
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.
MECHANISMS
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.
GENERAL AUTHORITY
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.
COURT APPOINTED
DEPUTIES
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.
OMISSIONS
Appointeeship
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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