August 2011 Update

SA Supported Decision Making Project:  August 2011 Update

Overview

The Supported Decision Making trial aims to assist people with a disability who need decision support to set up an agreement with people in their life, to provide this support, and to monitor the operation of the agreement. The model provides a “non-statutory supported decision making agreement”.

Phase I of this project has been a small in house evaluation to test the applicability of this approach.

The project has sought to set up agreements for people who have experienced either an acquired brain injury, autism, intellectual disability, or a neurological disease affecting decision making.

In phase 1 (up until June 2011) twenty two adults had been referred to the project, and eight have signed agreements. The agreements covered the broad areas of health care, accommodation and lifestyle. Within these areas participants nominated areas of decision making  in which they wish to specifically receive support including personal care, choosing support services, housing, diet, medical procedures, general health care,  travel and the use of alcohol.

The facilitator does not have a screening or approval function for choosing supporters or monitors, but instead assists the supported person to make their own choice. Assistance is provided to potential supporters and monitors to help them decide if they can take on this task. If the facilitator has professional misgivings about a proposed agreement, the facilitator can decline to endorse it. 

When asked participants reported positively reported on the information and education provided to them by the project facilitator.

An important conclusion from phase I is that supported decision making agreements can be effectively established, and used.  An extension to this work was approved in July 2011 by the SA Health Research Ethics Committee increasing the number of people that can receive agreements using the current protocol from 10 to 15. 

Phase II, when approved, will increase the number of participants in the program to 40. An evaluator, Margaret Wallace, has been appointed to undertake the external evaluation of this work.

Themes that have emerged from the project

The following themes have emerged both from practice and discussions within the Project Control Group.

The need for a strengths based approach

People with a lived experience of disability on our project group pointed out the need to build up confidence in decision making.  From a young age people can be subtly taught that decisions are for others to make, and their role may at best be to express a view. This particularly applies to those who have had a lot of dealings with institutions or traditional service systems.  For this reason we have based our strategy on a “strengths based approach”, building on what a person can do, rather than a traditional deficit based approach.  Although our project is in its early phase, we expect as people get more practice at making decisions, they will develop confidence, and the need for decision support will decrease.

Something we found striking, was the celebration of the signing of agreements by some participants.  Our facilitator observed that participants felt positive because the agreement meant that the person would make their own decisions.  As one person told our facilitator, this was the first time in a long time that anyone had expressed confidence in her ability to do anything.

The benefit of a supported decision making agreement over “informal” arrangements

Our facilitator is sometimes asked to explain why “support”, which is a natural phenomena in everyday relationships, should be formalized in an agreement.  Some people seek an agreement because existing informal “decision support” without an agreement can lead to others making decisions for them.  A written support agreement can keep family and friends involved in a person’s life but without taking over, and therefore prevent informal substitute decision making.  For other people a support agreement will increase the time they have to discuss decisions with others, and the quality of the support received.  Some people wanted the agreement so as to take more control over their life.

The potential impact of social exclusion

A further learning, which in retrospect should have been obvious, is the impact of social exclusion on people with severe disabilities.  Unaddressed this could limit the potential reach of supported decision making.  Three out of 22 people referred to phase I of our project were unable to proceed to an agreement because they did not have people in their lives who could act as supporters.  These people wanted supported decision making, and were otherwise suitable for this approach.  Ultimately any strategy needs to consider how isolated people may benefit from Supported Decision Making.  This includes having links with programs that develop social networks for people such as “circles of support”, and the use of volunteer supporters.

Obligations of service providers to communicate directly with their client

A supporter’s role is to focus on the needs of the supported person, and is not intended as a convenience to service providers who might seek to speak to a supporter instead of taking time to communicate with the supported person.  A supported person still should receive information directly from services (such as health, disability, housing, and education etc).  There is a duty of reasonable accommodation to assist people with a cognitive disability receive information in an appropriate form (based on Article 5).  When needed the services should use strategies such as simple language, diagrammatic aids and be prepared to spend more time explaining options. 

Safeguarding and a “A Right to Safety”

The program has developed its safeguarding approach to prevent the misuse of agreements.  Recognising that some of the participants are in an “at risk” group for personal violence or neglect, we returned to the UN Convention for guidance – in particular Article 16 Freedom from exploitation, violence and abuse.  This assisted us focus in planning that a right to safety is upheld while maintaining other rights.

Obligations of service providers to communicate directly with their client

A supporter’s role is to focus on the needs of the supported person, and is not intended as a convenience to service providers who might seek to speak to a supporter instead of taking time to communicate with the supported person.  A supported person still should receive information directly from services (such as health, disability, housing, and education etc).  There is a duty of reasonable accommodation to assist people with a cognitive disability receive information in an appropriate form (based on Article 5).  When needed the services should use strategies such as simple language, diagrammatic aids and be prepared to spend more time explaining options. 

“Metapreferences” – respect for an individuals own decision making style

Finally, in reviewing the decision making literature we were struck by the need to acknowledge different decision making styles used by individuals in making choices.  These are called “metapreferences” – there can be variance between individuals in areas such as the amount of information collected before making a decision, speed of decision making and use of intuition.  A supporter should not only avoid making substitute decisions, but also should not substitute the supported persons approach to decision making with their own.

The Supported Decision Making Project is collaboration with the Julia Farr MS McLeod Benevolent Fund