What is your role?
I am a parent carer of two young people with SEND (aged 24 and 21). One no longer lives at home, while the other is still at college with an EHCP. Additionally, I represent Parent Carer forums in the South West and serve as Co-Chair of National Parent Carer forums.
Tell me about the importance of the Parent Carer Network?
The Parent Carer Network is incredibly important. Before my youngest was diagnosed, I believed they were autistic. The difference in people’s attitudes when you have conversations or question your parenting can be isolating. There is nothing worse than not knowing how to manage your child on bad days and feeling distressed without support. It’s incredibly important to sit with someone who understands exactly what it’s like to have those experiences.
How do you feel communication/support/advice to Parent Carers has changed during your time in post?
There has been more emphasis on self-help, with parent carers wanting to be independent and in charge of their destiny. Every journey is different, with informed choice being key. There is still some way to go in terms of systems for support, advice, and guidance, but it’s improving. Conversations are now happening earlier, even at the pre-diagnostic stage, which is a positive step. Many people may not want a label, but it could make life easier. It’s about a sense of belonging, with neurological conditions becoming more openly discussed. It’s important to seek and access support and understand what’s available, even if choosing not to have those conversations.
What are your views on the proposed changes to better support SEND students and their families?
The SEND review and change programme are works in progress and a step in the right direction. It’s important to test these changes rather than imposing them. However, it will take time to see their full impact.
What are the difficulties of supporting Parent Carers in the South West, and what has been done to overcome these challenges?
Supporting Parent Carers in the South West presents challenges, particularly in rural areas like Cumbria, which is where I am originally from, the problems apply in rural areas in the south west, where understanding may be lacking. Issues such as staff retention, cost of living, and the distance between home and schools are complex. Building more schools isn’t always feasible, and not always the right answer.
At Spaghetti Bridge, we aim to make the pedagogy practical, real-life and experiential. We use industry experts and children create projects to use their skills and see them come to life. How do you think we could influence mainstreams in adopting this approach to support the many, rather than the few?
Really interesting subject. Education use standardised tests, thankfully children are not standardised. Industry leaders talking to students and inspiring young people to be the next industry leaders is paramount. It’s important that children and young people with SEND get the same opportunities and look at the entrepreneurs in the world. It’s essential to think outside of the box.
Definitely worth sharing, if they end up in work and in the industry, proof that its worth doing. It’s the Government that you need to show.
You’ll be aware of the significant financial challenges facing LAs across the South West and the many programs of support offered by the DfE. How do you think that is impacting parents and carers in the South West?
Tina is involved in DBV and not the Safety Valve and have not received any intel into it as PCF. The DBV looks at support in the right place at the right time and early help. Early support can prevent families from reaching crisis mode, ensuring their needs are met. However, insufficient funding and crisis management focus can make it difficult for families to recover. It’s crucial that provision matches the child’s needs and that they are adequately supported.
Who is your biggest SEND inspiration?
My biggest inspiration is the parents of children and young people I encounter in both my work and personal journey. Many families inspire me with their resilience and determination to tackle each day. Children and young people with SEND are incredibly resilient, as are the many individuals I work with who are truly remarkable.
Why is communication with families so important?
Communication with families and carers is essential. Half the battle is ensuring they are informed and able to make informed choices. We must be mindful and provide support and information to these families. Good communication and listening skills, also help families tell their stories once, nothing gets a parent carer or child and young person more frustrated or question trust, than telling their story what feels like a billion times.
To understand parents and avoid being judgmental, trauma-informed training is essential for our parent/carers and for those who support them.