Making Decisions and Independent Living

This article explores the experiences of participants of an Independent Living Skills Group: what they learned; how they learned it; and why decision making is so important in the context of the current Irish disability climate.

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  • The government are noticing that it is very important for people with disabilities to make decisions about their lives.
  • A group of people with intellectual disabilities in Dublin came together because they wanted to improve their skills to be more independent at home or to be able to move out.
  • An Independent Living Skills Group was set up for these people to learn the skills that they needed.
  • People in the group learned a lot of practical skills but they said that the most important thing they learned was how to make decisions and that they can learn from each other.
  • This is important because the government wants to make new laws which will mean everyone gets to make decisions about their own lives.
  • Groups like the Independent Living Skills Group can help people to learn the skills they need to make decisions.

Before you leave the house every day, you have already made numerous decisions. You have chosen when to get up, you have chosen whether or not to brush your teeth, you’ve chosen what to wear, and you’ve chosen what to eat for breakfast. Without realising, you have made a significant amount of decisions. When you consider the amount of decisions you make during the time it takes to get up and leave the house in the morning, the amount of decisions made during a lifetime must be enormous.

 

Being able to make decisions is important. It shows that you are independent, responsible and that you have confidence in yourself. It has been identified that we learn how to make decisions by having opportunities to make choices and learn from our experiences. For example, if you decide to stay up late the night before you have to get up early, you feel tired the next day. The next time this situation arises, you may decide not to stay up so late to avoid feeling tired the next day. Therefore, having the opportunity to make decisions, whether they are considered wise or unwise, is paramount in developing decision making skills.

 

In Ireland, the importance of decision making for people with disabilities is slowly being recognised. The right to choose for people with disabilities is beginning to be recognised through the implementation of the New Directions Policy, as well as the promise of the Assisted Decision Making Act and the ratification of the Convention of Rights of People with Disabilities. The recognition of these basic rights suggests that Ireland is beginning to move from a paternalistic, custodial disability culture, to one which recognises the importance of informed decision making and equal citizenship for people with disabilities. Because of this, people with disabilities are beginning to take more control of their lives, as they are experiencing increased opportunities to make decisions. These developments led to the creation of the Independent Living Skills Group.

 

As a result of people with disabilities taking more control over how their lives are run, support workers and advocates in Dublin began to identify a cohort of people with intellectual disabilities who had goals of increasing their independence at home, or had goals to move into their own homes. Although there was significant motivation to achieve these goals, opportunities to develop the skills required did not exist. Therefore, in 2015 the Independent Living Skills Group was created to provide a space for people to learn the skills they required to increase their independence.

 

In 2015, 8 people with intellectual disabilities participated in an Independent Living Skills Group which occurred once a week for 16 weeks. This group was entirely member-led. During the first group session, members identified goals related to independent living, which they aimed to achieve through group participation. Group member goals included developing skills in cooking, budgeting and job seeking. Each week, group members selected group content and took an active role in planning the two-hour session. A piece of research was carried out during the group to explore the group members’ experiences of independent living and group participation.

 

Upon completion of the group, members participated in a group evaluation, which explored the group members’ experiences. Group members reported an improvement in independent living skills related to their initial goals. However, the most significant learning was identified in three key areas; decision making; recognition of the value of peer support; and the exploration of self through assuming group roles.

 

  1. Decision making – ‘making mistakes is okay, because that’s how we learn’.

 

The Independent Living Skills Group was framed by a ‘Will and Preference’ model. This model operated on the principle in that people have the right to make decisions regardless of if they are considered ‘unwise’. Due to this, group members made decisions which would result in ‘undesired outcomes’. These outcomes included burning pancakes; undercooking vegetables; and putting a piece of black clothing in with a white wash. As group members made these mistakes, they participated in group reflection to identify what had happened, and what they could do differently to facilitate their desired outcome. Group members began to identify how their decision making could result in their desired outcomes. On conclusion of the group, members identified these experiences as significant points of learning.

 

  1. Peer support – ‘The people kept me going every week because they all needed help and stuff. Yeah, because they know they can teach me and I can teach them and we can learn from each other. And that’s the best way of learning and it’s a good way to make friends as well.’

The Independent Living Skills Group was entirely member-led. Group members were responsible for selecting group content and planning each group. As a result, group members began to take ownership for group learning. Group members identified that they could learn from others, as they shared a lot of common experiences. It was recognised that group members could provide support and advise each other in relation to independent living goals in ways which the group facilitators could not. This was reported by group members as an empowering experience.

  1. Exploration of new roles – Beforehand I wouldn’t know how to, say, approach a problem or be more friendly with other people. And I know that I was friendly. But (now I can) be more funny’.

Group members took on a variety of roles throughout the duration of the group. These included the ‘joker’, ‘initiator’, ‘information seeker’ and ‘evaluator’, among others. Group members identified that they assumed roles which contrasted with those that they assumed in life outside of the group. Some group members reported assuming roles related to leadership and responsibility, while others explored roles related to humour and friendship. Members reported that an exploration of self and a sense of empowerment was facilitated through the assumption of novel roles.

Why is this important?

Through the exploration of group members’ experiences, it emerged that although the content of the group was important, the most significant learning occurred through group participation and interaction. By actively planning, participating in group activities and engaging in reflection, group members explored the impact of decision making and the experience of empowerment. These experiences were facilitated in an environment in which it was ‘OK to make mistakes’ and where reflection occurred following a decision making process. When contextualised in the current Irish disability climate, the findings of this research present an interesting point of discussion.

As Irish disability culture continues to evolve through the introduction of new policy and legislation, the population affected by these changes must also prepare for change. The findings from the Independent Living Skills Group identified that often, people with intellectual disabilities are not offered the opportunities to make decisions, let alone choose unwisely and make mistakes. This indicates that people with intellectual disabilities, when compared to the general population, have experienced fewer opportunities to develop decision making skills. Therefore, as the importance of informed decision making is being recognised, the decision making skills of those who are going to be making decisions needs to be explored, and opportunities provided to facilitate the development of decision making skills.

Not only did the Independent Living Skills Group identify the need for people with intellectual disabilities to develop decision making skills, it also uncovered a simple yet effective method of doing so. Decision making skills can be developed through group interactions which occur organically as a group works together to achieve meaningful group and individual goals. However, for these skills to be developed, an environment which both accepts that mistakes will happen and lets them occur, is vital. In summary, disability policy and culture is changing, and so must the people whom it will impact. If we want to keep up, we have to act now. Now is the time for people with intellectual disabilities to develop decision making skills through opportunities such as the Independent Living Skills Group where it is ‘OK to make mistakes because that’s how we learn’.

Eve RoseingraveEve Roseingrave is an occupational therapist who recently completed a masters in Trinity College, which explored the concept of Independent Living through the perspectives of people with intellectual disabilities and advocates from the National Advocacy Service.

If anyone would like further information on this group or has an interest in setting one up, contact Eve on roseine@tcd.ie

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