The Road Ahead – Main report
4. What information do parents and supporters think young people need at transition?
This section looks at the parents' and supporters' ideas about the information they thought young people with learning difficulties needed at transition.
The parents thought that young people needed information about: the transition process and their role within it; how their support needs would be met; and information about the choices available and how to access choices locally. They felt that young people would ask questions such as:
- Have I got a choice?
- Who is who in this world? Who can help me?
- Who would look after me if I left home? Where can I get support? Who will take care of the personal help needed?
- Can I have a boyfriend?
- How will I get to see my friends?
- Can I get married and have a baby?
- Is information available? How accessible is the information?
Their discussions of their young person's information needs reflected their concerns about what was realistic for their young person to aspire to in the context of their support needs and the services available locally.
One parent, for example, questioned their young person's understanding of the:
'Difference between fantasy and reality.'
Another pointed out their young person's difficulty:
'Understanding the world around him.'
'Would he know what independence means in respect of his age?'
So the parents questioned their young person's aspirations in relation to the local context (services and support available), their young person's actual ability and their role in the transition process. The parents' phrasing of the questions they thought young people might ask indicated that they felt that the transition process might, in reality, limit and restrict their young person's choices to those which could actually be provided or supported.
These concerns were expressed within the context of their love and concern for their young person. They wanted the best for them and did not want them to be disappointed. A number of parents specifically discussed the need for their young person:
'To know their value as people.'
'To be valued/loved.'
Parents also expressed concerns for their young person's safety and ongoing need for support and protection. One parent specifically suggested that information on disability was required so that the young person was prepared for potential bullying in the future.
Another parent said:
'He would like to know he is safe and that the person he is with can understand him and pay attention to his needs and likes and look out for him in general and not treat him like a child, give him confidence and independence.'
4.3 Supporters' views
The supporters focussed particularly on the young people's need for empowerment and for their voice to be heard within the transition process. They suggested that young people would ask questions like:
- What are my likes? What are my dislikes?
- What does independence mean for me?
- How will I follow my dream - eg to be a DJ?
- Have I got the necessary skills?
- Will I be respected and be treated as a normal person (with no labels attached)?
- How do I feel? How am I going to survive all the changes?
- Will I be able to decide who supports me?
- What jobs are available and how much money will I get?
The supporters' views of young people's information needs confirmed the implicit theme within the young people's own discussions that they should be respected in their own right. Their desire to, and need for, information about work, housing, sex and relationships, living independently and 'being in charge of their life' all indicated their desire to live in the same way as their peers, to be respected as an adult and to hold the rights and responsibilities that come with being an adult.
The supporters' views reinforced the importance of the young people's rights and responsibilities and focused on ensuring that the young people were empowered and enabled to think through their choices and to have their voice heard during their transition. The majority of the supporters' comments questioned the young people's current situation and the lack of appropriate information available, so that decisions could be made by them. The supporters felt that young people needed information to help them say 'this is my life' and 'this is what I want and how I want it'; information which assured them that they were allowed to make choices and be 'able to say no and change their mind.'
The parents' and supporters' perspectives on the information needs of young people highlight important, if different (even contradictory) themes: the supporters' focus was on young people's concern with empowerment and being in control of their own lives; the parents' perspective was that young people do not have control of the overall process and may feel the need to obtain permission to make their choices.
This section described parents' and supporters' views of the information they think young people would want to know as they grow up.
The parents' perspective focused on the need for information about the transition process and their role within it, how their young person's support needs would be met as well as information about the choices available and how to access the choices locally.
Supporters focused on the information young people would need so that they were empowered and their voice could be heard within the transition process.