How we got the best short breaks deal for local families

Thursday May 24, 2018

A parent carer forum is a group of parents and carers of disabled children who work with local authorities, education settings, health providers and other providers to make sure the services they plan and deliver meet the needs of disabled children and families.

Forums do really important work and can be instrumental in making sure families are at the heart of decision making. Often their achievements go unnoticed, so we invited Karen Russell, chair of Bedford Borough Parent Carer Forum, to blog about how her parent carer forum worked with the local authority to reverse a decision that would leave local families in a crisis situation.

We suspected that no co-production had taken place

Recently our local council went out to tender for their Short Breaks Services. This includes weekly Saturday clubs (monthly for the most complex children) as well as holiday play schemes.

For as long as we can remember, these were delivered predominantly by three local charities, who are very much trusted and respected by the families who use their services. However, the contracts had been awarded to a local organisation that has limited experience of working with the local SEND (special educational needs and disabilities) community.

Our forum suspected that no co-production (or consultation at least) had taken place with families currently accessing these short breaks services (the forum were certainly not involved, which is very unusual), so we immediately got to work on contacting the council employees who had been involved in the procurement, as well as the local charities and our parent carers.

Significant impact on our SEND families

We contacted senior officers of the council, with whom we have a very good relationship, and arranged for myself and another forum member to meet him later that week. We asked that in the meantime he look into why the process went ahead without any parent carer input.

When we met we made sure we explained clearly the significant impact the decision will have on our SEND families. Because I am in receipt of short breaks myself, and a large number of our forum members are, we were able to talk about how our SEND families have spent years building up relationships with the organisations currently delivering Saturday clubs and holiday schemes. It will have taken a very long time for parent carers to feel confident that their complex children and young people would be safe when attending.

We also mapped out likely scenarios and the impact these would have on the local authority. For example, we pointed out that the timescales being talked about would not allow sufficient time to train staff to the level needed to care for this very complex group, and secure the resources needed to support them. And most importantly, parent carers would never leave their children with any organisation that they didn't have absolute confidence in.

Working together to move forward in the best possible way

Throughout these conversations we made very clear that our opinions were in no way a reflection of the new organisation, and that our only concern at this time was ensuring that families were not left in a position whereby they had to choose between having no respite throughout the school holidays, an extremely challenging time for SEND families as it is, or sending their child somewhere that they had not had the time to sufficiently prepare their child to attend safely.

Throughout these discussions we continued to work in the way that we always do as a forum, continually thinking about how we can work together to move forward in the best possible way, and with best possible outcomes at the core of everything we do. Obviously this did involve some difficult and uncomfortable conversations, but it was clear from the start that all parties around the table wanted the same thing!

As a result of these discussions, the senior officers of the council agreed that a mistake had been made and the implications for our SEND families could be massive. He took the decision to meet with the local authorities chief executive with a recommendation to stop the process and continue to fund the current short break providers for the next year. This would ensure families would not be forced into a crisis situation and allow sufficient time for a thorough and inclusive review of the local authority's short breaks offer. This recommendation was upheld.

We are respected as equal professionals

As a forum we are extremely proud that we have built up such a good relationship with the local authority, and that we as parent carers are respected as equal SEND professionals. Obviously we were disappointed that we found ourselves in such a situation, but chose to focus on working together to move forward rather than working against the local authority, which we know would not have led to best possible outcomes for our families.

We are now jointly leading a short breaks review with social care, which will include the co-production of an updated short breaks statement. In order to do this meaningfully, we will be holding a number of events around the county to enable as many parent carers as possible to input.

If you're inspired by this story, find out more about joining a parent carer forum.

Forums have a duty to listen to the views of other parents in the area when they're making decisions, so even if you're not a member of a forum you can still make sure your voice is heard.

Find out about your local parent carer forum [PDF].