Ms Caroline Canton:

Family forums are part of our governance structure for our CDNTs. We will have a family forum for each CDNT. Here, the families can meet together on a regular, if not very frequent basis. They have an opportunity to discuss matters and to hear from the CDNN and be told what is happening. They also have the opportunity to discuss their issues and what suggestions they may have to improve services, which is really important. For example, in CHO 4 there are 14 teams so there will be 14 family forums. For example, in CHO 4, each family forum will elect two or three family representatives. They will all meet as a family representative group and they will have two members on the governance group. They are actually sitting with the CEOs and the head of disability services, etc, on the governance for the children's disability network teams in that area. The family forums are very important to hear families' views, to get their ideas and to start to look at some co-design. Often the people using a service are the people who can best make suggestions on how to improve them, on governance etc. Some of the family forums have just started. In CHO 6 and CHO 7 they have mostly had their first meeting and in other areas they will very shortly have their first meetings.

Family centre practice is, as mentioned in the briefing, a change of philosophy in the way of providing services. It is an approach which changes from the traditional expert-led approach to actually looking at and hearing what is important for each individual family. Every family is different and every family has its own issues and culture. We need to really hear from them, reach out to them and find out what is important to them. I remember talking to a disability activist who told me that she had spent hours in her youth seeing an occupational therapist to learn how to tie her shoelaces. She said she was never going to be able to tie her shoelaces anyway and she did not need this help. That is an extreme example but what was important for her could have been something completely different that the occupational therapist could have focused on. It is a major culture change. Much of our training focuses on our staff being that expert and we need them to have that expertise and skills. Nobody is taking that away from them but they now have to pivot a bit away from that assess, treat, discharge, straight-line model to actually talk to the family and find out all aspects of the child's life.

This includes all kinds of spheres for the child, including at school or preschool, the use of transport, their housing, their equipment, their car and all kinds of issues. The team needs to hear about those and start to tackle one thing at a time. That is where the plan comes in. What will we start with? I gave the example of sleep. That would be typical. Let us get that first. Then the team undertakes to really support the child in managing that issue.

This is huge for families and for many - I would say most - staff. This is a big change for them and we are trying to give them whatever supports we can. We had a national team development programme which gave a couple of days on family-centred practice, first to children's disability network managers, CDNMs, and then to CDNT members. That was starting them off with the basics. We have guidance documents on how to approach an IFSP and I am revising that with a group of senior professionals to improve it and help teams to understand it.

We also need to provide far more communications for parents and families on what this means. Webinars and other things are ongoing. We had a plan for a small number of senior professionals to be seconded for a temporary period to work with our teams, coaching and mentoring them in family-centred practice and getting together a library of resources for families and teams. However, the lead agencies felt that, with the huge pressures members are hearing about in staffing teams, this was not the right moment to take any senior professionals away from the CDNTs, even though it was a relatively small number. That has been put on hold for now but we hope to get that. It is work in progress and we need to keep working at it.