The right to self-determination - setting the scene

Joan Murphy

2/16/2017 6:23 PM

The right to self-determination is enshrined in law. In 1948 Eleanor Roosevelt, as the chair of the United Nations Human Rights Commission, was the driving force in creating the Universal Declaration of Human Rights Act (1948)

Since 1948 there have been laws passed in many countries stating that people with communication disabilities should have equal rights, including and specifically in the complex area of mental capacity. In the United States the Federal Law that covers this is the Americans with Disabilities Act of 1990.

In the UK the key Acts of Parliament are the Mental Capacity Act (2005) England and Wales and the Adults with Incapacity Scotland Act (2000).

The UK Acts specifically focus on mental capacity and say that every adult has the right to make decisions unless proved otherwise and that each individual has a different capacity
to make decisions about different aspects of their life. In addition they state that we must assume that someone has capacity unless it is established that the person has substantial difficulty in one or more of the following criteria.

1.Understanding relevant information

2.Retaining information

3. Using or weighing up the information

4. Communicating views, wishes and feelings

There are a number of important expectations behind these Acts which are particularly significant for people with communication difficulties.

• Everyone should be supported to make their own decisions (including Augmentative and Alternative Communication methods).
• Adults should be encouraged to make use of their skills and to learn new ones where that would be helpful.
• Information to support understanding needs to be given in a way that is appropriate to his/her circumstances (using simple language, visual aids or any other means).
• People are entitled to make their decision – this is not about what we think is good or bad.

Judgments on capacity:

- cannot be based on age, behaviour or disability
- need to be made decision by decision – (so not being able to make more complicated decisions does not apply to all decisions)
- cannot be based on past experience of decisions – they need to focused on the here and now
- must take into account the adult's socio-cultural circumstances wherever relevant.

• Where a person is able to retain the information relevant to a decision for a short period only, this should not prevent him or her from being regarded as able to make the decision.
• If someone is judged to lack capacity then decisions must be in their best interest and any measures taken on their behalf are to be the least restrictive to the person.
• It is important to assess people when they are in the best state to make the decision.

In my next post I will explain how Talking Mats can help support decision making and the identification of Capacity.

What are the support and barriers to self-determination where you work?

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Thanks for this Joan. Too often busy health practitioners take the attitude of once someone has an Adults with Incapacity Certificate, they are no longer asked for their views with regard to any decisions. Surely, the ideal has to be that individuals can make informed decisions whenever possible. Feel we should reflect sometimes about how we would feel if we were not able to influence decisions relating to our lives!

Helen Beltran - 2/23/2017

Hi Helen. Absolutely!

The law is clear that judgements on capacity need to be made decision by decision.

A man that I worked with, who had severe receptive and expressive aphasia, could make the decision about where to go on holiday ( and his wife wanted him to be involved in this) but he could not make decisions about his finances. After working closely with their lawyer and using Talking Mats he was able to indicate clearly that he wanted his wife to make financial decisions for him. The lawyer was satisfied that he had evidence of the man's capacity and the man and his wife were both delighted that he had been genuinely consulted and listened to.

Joan Murphy - 2/24/2017

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I think you have really hit the nail on the head with this post Joan when you "Everyone should be supported to make their own decisions (including Augmentative and Alternative Communication methods)." Unfortunately, the Mental Capacity Act that we have in England and Wales and other legislation are used by practitioners for the purpose of exerting their own control over the service user. I've seen the phrase "done under best interests" too many times in my career for my liking. The purpose of these acts is to ENABLE people to make decisions, or at least be involved as much as they can, not to serve as a vehicle for practitioners to exert their influence.

Greg Cigan - 2/23/2017

Thanks Greg for your insightful reply. I absolutely agree - the whole issue of 'control' in communication between a practitioner (even a very well meaning one) and a person with a communication difficulty is a thorny one which we have discussed many times here at the Talking Mats base.

What we hope is that Talking Mats provides a tool which can help address this. By its nature the structure of the Talking Mats framework expects the practitioner - we prefer to call them the 'listener' to say very little and allow the 'thinker' as much time as s/he needs to think things through and then respond.

Joan Murphy - 2/23/2017