25% of the participants came from outside the Derry area.
Evaluation
All the participants were more than pleased with the choice of venue and were impressed by the presentations, 63% of whom highlighted the parent’s presentations as the most meaningful. Again all those who responded to the question on the suitability of the information, confirmed that it was suitably presented (4 did not answer this question). Only three of those who responded felt that the time restraints did not give a full opportunity to discuss the issue of time out fully. All those who replied agreed that the mixture of different people and different viewpoints worked. This confirmed the stance of our own Group on this issue, which we have held for a number of years.
Although it was felt generally that the issue was well discussed, almost a third were not sure if the conference could move the issue forward. We are very pleased that all those who completed the question as to whether they would attend other Group events, stated they would.
From these evaluations it is obvious that the conference worked well for most of those who attended. As a platform to hear different views and perspectives, to mix with people who came from many different backgrounds, the event proved to be very positive. Yet again, when parents have an opportunity to let their voice be heard, they do impact and impact profoundly. This takes nothing away from other presenters on the day. Our emphasis on accessible language with no jargon, presented in short inputs with no presentation aids, worked very well. The choice of venue was well justified, it was more than helpful in creating an atmosphere where this debate could take place even though the workshops where time restricted, 77% of those who replied felt they were worthwhile.
We appreciate that “time out” is only one issue. When asked what other issues should be highlighted, participants identified those below, as the ones that they would like to be covered in the future: education, transition, mainstream, time out (more discussion), training, funding, siblings, rural provision, carers need, specialist childminding, lobbying, lack of services to young disabled people with learning disabilities, learn from models of good practice, care co ordination, speech and language provision, issues facing children under 5 and their families, courses for families (including building up self esteem) and streamlining of FHSST programmes.
What They Said
Participants were asked to identify key messages from the day. These responses, summarised below, give a very accurate summary of not just what they said but what is meant when we talk about time out provision.
Time out should be family focused, involving all family members (disabled children, siblings, parents and family members) and should be focused on those who receive services rather than those who provide services. Resources are needed and they have to be lobbied for but nothing is impossible. Concepts such as choice, flexibility, partnership working are central to the development of a time out service, as are the rights of those on the receiving end and serious consideration should be given to inclusive services. It has been recognised that parents are a powerful force, they need to be listened to.
Final Comment
The stresses and strains of caring create the need for time out, families have a right to that kind of support. Additional resources are needed to meet this need and politicians, parents as well as those in the statutory and voluntary sectors need to play a part in lobbying if this is to become a reality. Good practice should be acknowledged and built upon. At the centre of this then is not how services are delivered rather how they are received by a variety of family members. If even some of these issues are taken on board, the conference will have been useful.
The Messages
- The needs/rights of children with disabilities and siblings
- Structural change to services
- Lobbying needed to secure resources
- Short breaks for the whole family are needed
- Family centred, needs led, flexibility and partnership working
- Need to know more of the big picture re: funding needs
- Listen to parents and families
- Services need to be promoted
- Everything is possible – need the will
- Inclusion
- Creative approach to developing flexible time out services
- Empathy for families
- More accessible time out to meet different needs
- More resources
- Be better informed about what is going on
- Priority for politicians
- Working together
- Parents are a forceful forum
- If the parents don’t shout we will never be heard
- Time out very individual to each child and family
