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Stepping Stones: A report for Families
A proposal was made for a family-led service for deaf children and their families for the whole South West region. Stepping Stones is a project to see if it would work.
Project Team: Mick Canavan, Parent Nona Dawson, Interviewer Jim Kyle, University of Bristol Jean McLaughlin, Family Centre Tim Williamson, Audiology Anna Willoughby, Parent and interviewer And others in Centre for Deaf Studies
This is why we ran this project.
It all started for 3 reasons.
1. We read some research about other Centres in the North West and in East London. The one in the North West covered a wide area. This allowed lots of families to meet up at big social events. Families could find out about services in other areas and could even use them if they were useful. The one in East London paid a mother of a deaf child to be a family support worker. She would visit families at the time of discovering the deafness in a baby or child. She organised “coffee mornings” and helped people to get to them. She reported back to the professionals (the audiologists, teachers and doctors) what could be done better. 2. The Family Centre (Deaf Children) in Yate, Bristol was looking for new premises. 3. The Government was writing a number of documents about families with special needs children. They said how important it was for families and their children to have a say in what services they had. Also they wanted families to be “shaping” the services.
We then had the idea of making a larger Family Centre for the South West region. We could take on board the best ideas from the research centres. The Centre would be for families, and run by families.
But we could only do that if people liked the idea and thought it would be useful. So this report tells you what we did.
We looked at all the research on the subject. We looked at research from all round the world. Lots of reports talked about “family-centred” work – but that still meant the professionals were in charge and running the centres. There were no reports where families really did run their own centre.
We checked out all the sensory support websites in the South West. If you want to find out about services, most people look it up on-line. We found the information there was very poor. All the health services and Education Authorities had different types of websites. It was difficult to find your way through.
We asked the professionals what they thought. We interviewed 7 professionals all with different jobs in different places.
We asked them how families got their information about local services. They said that they gave families the information as and when they needed it.
We asked them how they thought families could have a say in how the services were run. They said it was through the Children’s Hearing Services Working Groups (CHSWGs) – known as chizzy-wigs!
We asked families what they thought. We interviewed 12 quite different parents. The interviewer was a parent herself – and she was interviewed herself at the end of her task. There was a lot that came out of these interviews. Here are some of the key points in no particular order:
The time when you found out that your child was deaf, was really tough for many families.
It was not true that families with deaf children were mostly the same. They were all different types of family, and the children all had different types of deafness. So services need to be different and special for each and every family.
There were lots of appointments, and for many families it was very stressful finding enough time. Most families aimed to get to all meetings about their child, but did not have the time to attend other general meetings.
Some parents find it difficult to be confident, with professionals, or in groups. There was no useful counselling.
Most children lacked friends – some had no friends. Whole families too felt isolated socially.
After the child starts school, there seems to be a loss of support.
Social workers were generally not available or unable to help.
It was difficult for fathers to keep involved.
It could be very difficult to get sign language training.
Most parents had not heard of “Chizzy-wigs” (Children’s Hearing Services Working Groups). Those that had heard thought of them as “talking shops”.
Parents’ experiences with the professionals varied a lot. One concern was that their advice was sometimes biased. Professionals would come and go through the child’s life.
We reviewed the work of the Family Centre (Deaf Children) The Family Centre at Yate had been running successfully for 15 years. Families found The Family Centre at Yate very useful and valuable – particularly those living near Bristol. It was run by families, but that was proving difficult. There were problems finding parents that had enough time – and also those that had experience in management.
We asked about the impact of a regional Centre. Parents generally liked the idea of a regional centre, and the idea of having all the services under one roof. It would be especially good for young people to meet up. It could create a social life for the children and their families. The main problem would be travelling there for many families.
When we asked professionals, they were also generally positive. They did raise some useful points:
There would be a much wider catchment area – so there was a better chance for families to meet others with similar experiences. It could take on all aspects of a child’s life including emotional, social and intellectual. It could build on the experience of parents of grown up deaf children who have been through the system.
What we want to happen now 1. An open day for families across the region to meet and discuss. We could suggest some new plans to see what people think. We are thinking of a common website for all services across the region, of a networking service for families and so on. 2. A conference for professionals so we can tell them what families want.
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