01 Oct 24
Natasha, a Coram Voice Care Experienced Consultant, tells us what she thinks about our new report into the experiences of children in care and care leavers with a disability
The stories that are in Coram Voice’s report are mind blowing! As a care leaver with disabilities (I have ADHD, dyslexia and currently undergoing an autism assessment) I was shocked to read in the report that so many care leavers report having a disability or long-term health condition and yet local authority figures don’t match.
I have never personally had any issues with my local authority or personal adviser (PA) when it came down to my needs. I think I was really lucky with the help and support I received during my time in care and before my PA left. They pushed for me to have a dyslexia assessment, but the school said there was a wait so they paid for it to be done privately, which allowed me to get all the support I needed for exams season during school.
Lack of understanding
When I first mentioned to my PA about having ADHD, and that a few people suspected I also have autism, she was not shocked. She was calm, and we were able to talk in depth about it. She reassured me that at the end of the day I am still me and no diagnosis is going to change what people think of me.
Professionals who shared their experiences as part of the research often mentioned that they did not feel confident in their understanding of neurodiversity. I don’t think my PA fully understood ADHD or autism, as it is not something they get fully trained in, but she was willing to learn with me, ask me questions and listen to me, which made me feel safe.
The report also describes a lack of communication between professionals working to support children and young people with a disability or long-term health condition. It is almost like they are not interested in putting children’s and young person’s needs first.
When I say lack of communication, I mean between everyone involved in the child’s life, talking to them about the impact of having a disability and working really well together to support them. The easy road is doing what professionals see fit to do regardless of the information around them not always being based on the child’s voice.
Issues need addressing
I think this report should be shared widely so that sector professionals can truly understand the impact it has on the children in care and care leavers when they don’t receive the right support for a disability or long-term health condition.
For those who are working with the children and young people it may seem like another day at work, but for those children and young people it’s their lives and health that are being put at risk and for what reason? With the number of children and young people with disabilities and health conditions rising, the issues raised in the report need to be addressed now, otherwise there will be more sad stories like the ones mentioned.
In the future I think that professionals who work with children in care and care leavers need to ensure that they fully understand the diagnosis that has been given, so that they can help children and young people prepare for the future. I feel there has definitely been an increase in professionals understanding neurodiversity and long term health conditions but in general they still need to be better informed through training and support.
We are human too!
I think what a lot of people forget is people who are neurodiverse are human too. Sounds odd to say that, but some people think that because a person is neurodiverse, they can be treated differently, in a bad way. This is definitely not the case, they should be treated any other person, but at the same time ensuring their needs are met in a safe and timely manner.
Overall, the report is educational, mind opening and sad at the same time. No child in care or care leaver should be neglected by their local authorities or social care team, who are there to help them. Their lives aren’t worth anything less than those helping. I know it’s not all health and social care (thank you to those who do truly care and are giving it your all, we appreciate that) but there is still lots we can do to improve the support for disabled children and young people. The report has lots of recommendations in it and I want to see these changes in action, doing this is a way of showing you care.
