Holly from ESPCF joined parent carers at a coffee morning with Chailey Heritage School earlier this month. The session focused on the transition to adult services for young people with complex neurodisabilities, particularly around Continuing Healthcare packages and funding.
The main themes we heard
Parent carers too often had to fight for support.
The importance of being familiar with the national framework around Continuing Healthcare, particularly the criteria for the different levels of need in the Decision Support Tool (see link in the right-hand navigation bar to read more).
The challenges of Continuing Healthcare assessments, particularly the importance of using the right language when describing care needs so they’re not underestimated or misinterpreted. This doesn’t always come easily for families, or the school, as their ethos is that of a strong culture of celebration of achievements and focusing on what the children and young people can do. An example was shared where a parent carer had referenced their young person ‘riding their bike to school’. The assessor had assumed it meant the young person independently pedalled a standard bicycle down the road. In fact, this was part of a physiotherapy program with a team of support in place to help the young person pedal the specialist equipment.
The importance of evidence. This can be professional evidence such as from occupational therapists, physiotherapists, speech and language therapists, dieticians, daily handling records, etc. But it can also be keeping a diary of care needs at home to record those things that we often don’t even realise we do because they are just a part of our everyday life.
Empowering parent carers to challenge decisions they don’t agree with, whether formally appealing a decision, or along the way such during the assessment. Parent carers can also have professionals who work with their young person attend the assessment to give further evidence or clarification.
The worry of being supported in the community once a young person/young adult has left Chailey, or after age 25. One parent described feeling extremely daunted and fearful by leaving the confines of Chailey.
Parents and carers of children and young people with complex health needs and with profound and multiple learning disabilities are underrepresented within the ESPCF membership. We want to make sure we are not overlooking any important areas where we could try and influence as your parent carer forum and would welcome your suggestions on how we can achieve this, for example details about existing groups we can connect with, or events we can attend.
We are very grateful to the families who attended the coffee morning and to Chailey Heritage School for allowing us to come along to listen and learn from their sharing of experiences and advice and support for each other.