Meaningful choice: information, support and decisions

‘Choice’ has been a buzzword in the disability sector for a couple decades now. We’ve heard a lot about ‘choice and control.’ The sector is trying hard to move away from its institutional past that consistently denied choice to individuals. Now, we can see ‘choice’ all over websites and promotional material of service providers. The intention is good: to ensure that people with disabilities have the right to choose. Unfortunately, many services have not achieved this in practice.

The right to choice means that an individual has meaningful options, is given accessible information, is supported to make a decision, and has that decision respected. This is true for every individual, including people with disabilities. Human rights law ensures this (Articles 9, 12, and 19; Convention on the Rights of Persons with Disabilities). But, that’s not why we should do it. We should do it because we respect people with disabilities as we do all other people. Everyone has a right to choice and to lead their own life. We should also do it because it is good policy. People are happier, healthier, and more productive when their autonomy is respected and they feel valued.

Let’s discuss this more practically. Susan is a friend of mine who is 25 years old. She has lived with her parents all her life. She loves her parents and has lots of fun with them, but she is interested in a new adventure. She is ready to move out! This is a momentous occasion in all young adults’ life. Susan has physical and intellectual disability and has also experienced anxiety and depression. She is ready to move out of home, but she also needs some support in a new home. She begins to ask around for the different services that are available to her. Her social worker tells her about a few group homes in the area. Susan doesn’t like the sound of them. Susan enjoys planning her own meals and going on walks in the neighbourhood. At the group homes, the staff members plan the meals according to current health standards. Susan could go for walks in the neighbourhood, but she would have to ask permission from the staff first and she could only go if there was a staff member available to go with her. Food options and neighbourhood walks are an important part of Susan’s life and happiness. She doesn’t want to sacrifice them.

Susan asks for more information about the group home and the experiences of the people that live there. The social worker apologizes, she says that she doesn’t have any more information and she is very busy and doesn’t have time to take Susan to visit the home. The social worker also tells Susan that these group homes are probably the only option because Susan has experienced anxiety and depression and is therefore not eligible for support services living independently. Susan didn’t know what to do. She felt that her only choice was to go into a group home, even though it sounded like she would be giving up a lot of the things that she likes about her life.

Susan is faced with a choice, but it is a very limited choice. She can either stay at home with her parents or go to a group home where she would have a much more restrictive lifestyle. This is not a meaningful choice. There are few things that could change to make this choice meaningful. The first, most obvious, is that more diverse services are made available to Susan. We all need to come together and advocate for the development of better residential options for people with support needs: available and well-managed in-home services; mixed ability housing where people with less support needs share homes and give support to people with higher needs; and others.

Sufficient support in making a decision is also essential for meaningful choice. We need to ensure that social workers, case managers, and NDIS planners have enough time and resources to provide support with these types of decision-making process or can connect us to someone who can. Once Susan makes a decision, it must be respected. If it isn’t, Susan’s right to direct her own life is not being respected. Also, when Susan goes to make her next big decision, she may not have confidence that it will be respected or that her choice matters anymore.

Finally, meaningful choice is created by the power of information! Susan was seeking information from past residents of these group homes and people who had experience using their services. This would give Susan a better picture of what the homes were like. This is an essential component of meaningful choice. It’s not true choice unless you have the information about the options! Unfortunately, this was not available to Susan. However, this is now offered by Clickability in Australia! This will give people with disabilities new power to have a say, to have meaningful choice and to pass information on so that others have meaningful choice too. Clickability is creating the platform for the right to choice to be realized.