Newcastle University

Taking On and Taking Over (TOTO) research project

The University of York are conducting research about the experiences of physically disabled young adults who take on some control and management of their own support arrangements.  They are looking for physically disabled people aged 18-25, who have some support from social care (this doesn't need to be from Newcastle Council).

What is it all about?

The purpose of the TOTO Project is to find out how much control young adults have over their care and support arrangements. The researchers also want to find out how much choice and control young adults want to have, and what helps them to take more control and make more choices. Talking to young adults is a very important part of the TOTO Project. We would like to invite you to take part in an interview for the project. This information sheet tells you more about the project and taking part.

Why me?

The TOTO Project is taking place in four local authorities, including Newcastle City Council. All these local authorities are contacting young adults on their caseloads who are beginning to manage or plan their care and support. That is why you have received this information pack.

Interested?

Please read the rest of this information carefully before you decide about taking part. If you are interested please send us a completed response form or email or telephone us. Once we have heard from you we will get in touch to discuss taking part and, if you are happy, we will arrange a time for the interview.

Parents too?

If it is OK with you for us to talk to your parents too, please request a parent information pack to send to them.  It is fine if you do not want to. If you and your parent take  part, we will not tell them anything you told us.

To say thank you….

We are offering a £20 shopping voucher to those young adults who take part in an interview. The voucher can be used on the high street or online.

What does taking part in the TOTO Project involve?

Taking part would involve one of the research team coming to interview you. The interview would take 60-90 minutes and would probably take place in your home but you can choose somewhere else if you prefer. (We can pay travel costs if you would like to be interviewed somewhere else.) You can be interviewed by yourself, or you can invite somebody else to come along, perhaps a parent or friend.

If you have any communication aids, just let us know and we will be happy for you to use these during the interview.

What sort of questions would you like to ask me?

We would like to ask you about:

• How much choice and control you would like to have over your support and care.
• Your experiences of working with people to plan and/or manage your personal support.
• How your parents help you manage your care and support.

Wendy Mitchell and Jenni Brooks are the researchers working on the TOTO project. They are based at the Social Policy Research Unit at the University of York.

If you have any queries, please contact Wendy:

• Email: wendy.mitchell@york.ac.uk
• Telephone: 01904 321950
• Telephone/text: 07840 412773

We will not tell anyone that you are taking part in this project or what you tell us in the interview.

All the information we collect during the project will be stored securely and will only be seen and used by the research team. All information will be kept strictly confidential in line with the Data Protection Act (DPA). We will not use your name or include information which identifies you in any of our project reports. However, if you tell us that you are being hurt or mistreated, we might have to tell someone else. Before we do this, we will talk to you about it.

“We will work hard to make sure the right people hear about the findings from the TOTO Project.”

At the end of the project, we will write a report summarising our findings. The report will make recommendations about the best way(s) to support young adults with physical disabilities to achieve the level of choice and control they want over their care and support. We will send you a copy of the project summary. We will also send it to social care professionals all over England and to the Government’s Department of Health.