Establishing the whole thing on the basis or direct payments helps to maximise your continuing control as parents, and to ensure that it develops as intended. It gives you a measure of control over the performance of any housing association or care provider too – all of whom could change or be changed as time goes by.

Staff are excited to work with the girls, they’ve said how fun it is to work with them and how different the support looks here in comparison to other areas of the support provider service

We and our daughter are fortunate that carers are at the house whenever it is occupied. As an individual she would not qualify for fulltime support.

Working closely with the provider means getting to know the core staff team, which helps develop trust which is particularly important with young people who have really complex needs. Our project doesn’t just focus on quality of care, but also quality of life. The focus is on lifelong learning and ongoing development for each of our children, which isn’t the norm within adult social care but has led to excellent outcomes. It is also rare to find a care provider who works so closely with families and we believe that this collaboration is what has secured a positive long-term future for our children.

We looked at a mix of providers, some very local and a larger national one. We felt they were giving us a sales pitch not a care pitch. You see the stories in the news about abuse and you need to be able to trust the care provider

The original care provider didn’t work out, I think they jumped before they were pushed really. They said all the right things at the start but couldn’t deliver what they preached

We’ve had poor experiences using care organisations in the past, but direct payments have been really positive. We wanted to use a parent led model, using direct payments and looked at setting up a trust to pool everyone’s direct payments. But because we need personal care we had to be registered with CQC and that wouldn’t work as a Trust. We decided to set up our own not-for-profit care company, its small and bespoke allows us to keep it really focused on living an ordinary life. Part of it is about valuing our staff too, we can pick the right people, who share our values, and make sure they are paid a fair wage for the work they do. Setting up the company – the governance, policies, CQC registration, insurance, staffing, funding – has been really time consuming and felt like we were constantly jumping through hoops.