The family of Claire Steeples, 43, tell her story, where determination and the use of a personal budget to buy care, have transformed Claire's life.
We have all heard the phrase ‘transition is like falling off a cliff, or into a black hole.’ That is exactly what it was like for me and my son. Our family’s experience inspired me to create Lost in Transition, a short film.
I want our story to make people think, to give feeling to the words. I have used a host of stereotypical images of people with learning disabilities, their family carers and the system. I hope to challenge these outdated serotypes, beliefs and myths, as some of them contributed to what happened to us.
The main challenge of my son’s transition was the rupture of moving from a specialist education system which he had been in for years (this is the cliff) to the adult world of a care system. My son’s only way of telling them there was no join-up between the two worlds was to self-injure and because no one listened this escalated to life-threatening proportions over months. This lasted a couple of years – a very difficult time for everyone.
I am sure many family carers will identify with some of the images in the short film. The ripple effect transition can have on families and support workers is wide-reaching. This is why we need better communication and planning. The rights of the family are often ignored around transition time, and yet this is a time when more support is needed, not less. Families need to be empowered instead of excluded. I didn’t ask enough questions as I was too trusting at the time.
What would have made a difference?
- Take away the cliff; fill up the black hole
- A person-centred approach
- More information
- Better planning
- Working together
- Training in Positive Behaviour Support
- Active support
- Communication skills
- Support workers being valued and better supported
- A carer’s assessment for me
- Higher expectations
- Knowing I wasn’t alone
- Transforming care!
There is a wealth of knowledge out there, much good work, some very vocal experts by experience – and yet we can still get it so wrong. Unfortunately our experiences are not unique. And they can literally take years to recover from.
I hope my visuals and our story will promote discussion and make people think.
Debby reflects on how she does her best with her son Simon who has a severe learning disability.