Dinah Murray and Mike Lesser
Jan 2004
[see also conference presentation Maximising Capacity and Valuing People]
The Draft Mental Incapacity Bill recognises that individual capacity for competent decision making fluctuates. Accordingly those concerned are required to take all possible steps to maximise capacity before decision-making powers are devolved to another person. The draft legislation suggests that maximising capacity will include offering support in the following areas:
“Understanding information relevant to the decision; retaining information relevant to the decision; using that relevant information as part of the process of making the decision; communicating that decision (whether by talking,using sign language or any other means)”
These are key issues, but we would add that the emotional environment, and the identifying and accessing of relevant information, are more basic. Because of their narrowly focussed interests and their problems with communication, people on the autism spectrum, both those who speak and those who do not, will in most cases benefit from support in all these areas.
“The authorities who decide on entitlement to services are usually unaware of the extent and significance of the disabilities in Asperger Syndrome [autism without speech delay]. Proficient verbal skills, overall IQ usually within the normal or above normal range, and a solitary life style often mask outstanding deficiencies observed primarily in novel or otherwise socially demanding situations, thus decreasing the perception of the very salient needs for supportive intervention.”
Drs Klin & Volkmar of the Yale Child Study Center (at http://www.aspennj.org/klin.html).
Just as they were for schools, we suggest deals should be negotiated for people of uncertain capacity to be equipped, at minimal expense, with accessible computers, peripherals and software.
(click image for bigger version of the picture)
- Broadband Internet Connection
- Access to other Net users
- Net search facilities
- Word processing
- Translation software (eg Makaton or Widget to/from text)
- Presentation software (eg Powerpoint etc)
- Graphics software
- Printer
- Scanner
- Camera
- Specially adapted hardware (eg large, simple mouse)
- Minimum training in the above
Even people who do not read or write can use this technology.
Taking these measures would be a cost-effective first step towards ensuring that as few people as possible are reduced to incapacity. Information technology has proved to have immediate benefit in empowering people and including them in contemporary life. It should also reduce the need for advocacy. Software designed to be easily used to display images, movies, sounds and text is readily available and can, with minimal hands-on support, store and present information relevant to decision making, and communicate decisions made.
A short case study from a day service equipped with Multimedia
“Sue finds it difficult to choose her own activities. We have to take her to different places, social events, or activities in the community several times before assessing if she likes going there or not. In terms of the swimming session, I would film (with Sue’s agreement) and take pictures of her activities. Before going each week I would show Sue her Object of Reference (swim suit), and reinforce her understanding of the activity by showing the picture of the leisure centre. After a couple of weeks, I would then place two pictures out in front of Sue, one of swimming, the other of Syon park, Sue will then choose the activity by touching the picture of her preferred place. The one Sue doesn’t want to go to she will push away.
“For nearly 1yr I had been filming Sue, on how she was making progress. I felt it was important for Sue to bring something of her own to her meetings, also it would give everyone a chance to see Sue’s likes, dislikes, needs, wants. Through the help of the Multimedia Profile classes, and months of encouraging Sue to use a communication switch, I was able to put a short film together for Sue and other people in her life to see the many changes she has experienced. The film was finally shown at Sue’s review with Sue’s consent. We used a laptop and connected the switch to the laptop. The film was on DVD, which was compatible to the laptop, we were using. This was great for Sue, she was able to introduce herself and open the meeting
“When Sue was ready, she would press the switch to show the next clip. Just before the end of the film, Sue pushed the switch away, and went to sit across the room to watch the rest of the film. While the film was being played, everyone was shocked to see the amount of things Sue can now do. All conversation was centred on her, it had moved away From what we think to what we see and know. The first comment that was said when the film had finished, was from a member of her family, she said it was ‘the first time she had ever seen Sue sit down and not hit herself throughout her review meeting’, they never thought they would see this day.”
When this programme of empowerment began, Sue used to spend most of every day screaming, spinning, self-injuring, and hiding in the day centre’s toilet for hours on end. She now goes swimming weekly with a swimming club made up of people of her own age group, and when she wants to “hide” she goes to the music room and listens to classical music for a while.
Mailed to:
Lord Filkin CBE
Selborne House,
54-60 Victoria Street,
London SW1E 6QW
The Rt Hon Tony Blair MP
Prime Minister
10 Downing St
London, SW1A 2AA.
Maria Eagle MP
Department of Works and Pensions
Correspondence Unit
Room 540
The Adelphi
1-11 John Adam Street
London WC2N 6HT
Dr Geoff Mulgan
Cabinet Office
70 Whitehall
London SW1A 2AS
Alan Johnson MP
Secretary of State for Education and Skills
Sanctuary Buildings
Great Smith Street
London SW1P 3BT
Dr Stephen Ladyman MP PhD
The Department of Health
Richmond House
79 Whitehall
London SW1A 2NS
The Rt Hon John Prescott MP
Deputy Prime Minister
26 Whitehall
London SW1A 2WH
Douglas Alexander MP
Minister for the Cabinet Office
Cabinet Office
70 Whitehall
London SW1A 2AS.
The Rt Hon Charles Clarke MP
Secretary of State for Education and Skills
Sanctuary Buildings
Great Smith Street
London SW1P 3BT
Baroness Catherine Ashton of Upholland
Department for Work and Pensions
Correspondence Unit
Room 540
The Adelphi
1-11 John Adam Street
London WC2N 6HT