Isaac’s Story: Having a Voice in Out of Home Care

Isaac is 15 years old, about 6ft tall, and you know when he is in the room. Isaac lives in his house with one other young person. Isaac experiences the world differently than others. This is because Isaac has Autism and a Moderate Intellectual Disability. Due to this, Isaac asks his team to be patient with him and give him the space to process the information they are giving him. Isaac also asks his team to speak in factual terms and give concrete statements, and to make sure he is informed of changes as he likes to know in advance and have as much information as possible to help him make decisions.

Isaac views the world through the eyes of Superheroes and Villains, and he has a very clear view of what is good or bad, or what makes him a Villain or a Hero. Isaac has a very strong personal sense of Social Justice and fairness.

Setting the scene:

Isaac has a calendar in “The House” and on it has his appointments including his Care Team Meetings. He doesn’t call his placement home, just “The House”. In Isaac’s house, there is a picnic table where we all sit. Isaac likes to sit opposite me to ensure he has the best eye contact for when he negotiates the terms of an agreement or a reward.

Isaac knows these meetings happen every month at his house, at the picnic table with his Case Manager, Support Manager, Support Workers and Therapeutic Specialist. In preparation for these meetings, Isaac likes to write down any points he has for the meeting or any questions he has for his team.

Upon arriving, Isaac is very excited to see everyone and likes that we are all there for him.

Starting the Care Team Meeting:

We would all sit down at the picnic table, and I would say: “Now Isaac, same as every time if you don’t feel that you can continue on, feel free to go for a walk or take some time to calm down and come back to the meeting.” Isaac would animatedly agree with a loud “OOOOOkkkkk” or “YESSSS, I know!” This for Isaac is repetitive, but also a part of the ritual of these meetings, he knows I am going to say it, and I know he will agree with me while also rolling his eyes before a smile would come across his face to indicate we can start the meeting now.

Isaac’s voice:

This would then be followed by “This is your meeting mate, what’s on your mind?” Isaac would take out his crumpled piece of paper with his Agenda on it, try to flatten it out on the table using his hand and then say “OK, can I have…..?” This would start negotiations at the table about how Isaac can earn his request or items that he wants. Isaac’s skills around negotiating are strong, and our team approach with him was based around ensuring his continued engagement in the Care Team Meeting, but also challenging him on his rigid thinking about some of the ideas.

For example, for Isaac to earn credit, he agreed to do some more independence skill-building within the house. We discussed contributing to washing dishes, cleaning his bedroom or cooking a meal. For Isaac, this increase in his skills meant one job and the easiest one to do at the house, take the large bins from the front of the garage to the top of the driveway (about 20 metres) on bin night. Isaac would not entertain the idea of any further “chores,” standing firm on the idea that each Thursday he takes the bin out and this will earn him his phone credit for the month. We challenged him but ultimately agreed to the terms he presented.

This is how we moved through Isaac’s agenda items. As time went on and the meetings became regular, and the rituals of those meetings created safety for Isaac, he became less rigid in his ideas, and he started to request things that weren’t material items, such as another young person to live with him, someone to help to clean his bedroom, staff he felt connected too to work with him more often and to help him build relationships with other people, so he wasn’t lonely. What coincided with this change was Isaac starting to seek out those positive outcomes we as practitioners are trying to achieve. We saw a significant reduction in behaviours of concern. Isaac stopped hurting people, and he started to build on his skills. His speech and vocabulary improved, and he wanted a future; he started to view himself as the Super Hero, not the Villain.

Isaac’s view of the future:

As a result of Isaac’s achievements and change, he has been living with another young person for the last five months. Isaac views him as a mentor and has made future plans as he watches his co-resident get a job, do his own laundry, build relationships with peers, build his self-esteem. Isaac is now engaged in job training, resume building, “chores” and requests invites to his own meetings via his personal email account.

In Isaac’s most recent Care Team Meeting he requested to see his files, he explained: “I want to know what happened to me so I can deal with it, move forward and overcome it, you know like Superheros do.”

 

Reflections on the role of Care Teams & Participation of Young People

Isaac’s story highlights some key principles of effective Care Teams and the participation of young people:

  • Child-centred: Effective care teams ensure that the young person is at the centre of decision-making and actions. For example, in Isaac’s story, his care team remind him at the beginning of each meeting, “This is your meeting mate, what’s on your mind?”
  • Flexibility and responsiveness: Effective care teams remain agile and flexible to the changing needs of the young person. In Isaac’s story, the care team meetings evolve with Isaac’s shifting understanding of his own needs: from the material (chores) to the relational (connections to staff and other young people).
  • Space is critical for meaningful participation: Isaac requests and is assured time and space to process information and prepare his ideas ahead of his Care Team meetings. He feels safe and included because his care team have taken the time to really listen to how he wants to engage and participate.
  • The importance of rituals: Its not always the content of the Care Team Meeting that is the most important aspect, it’s the way in which the meeting takes place. For Isaac, the ritual he participated in with his Team each month was the equivalent of “movie night” at home with your own family. It has the same cognitive and emotional outcome, safety, warmth, reward and comfort.

What examples of the use of Care Teams and the participation of young people are within your organisations?

 

To learn more about what the research says about the benefits of youth participation in residential care check out our research brief: Enabling Young Peoples’ Participation in Residential Care.

 

Written By

Isaac, Young Person and Hero of the Story

Lauren Cooper, Therapeutic Specialist, Lifestyle Solutions

Kimberley Lamb, Therapeutic Specialist, Lifestyle Solutions