I recently attended the launch of Family Voice Surrey, the new local forum for parents and carers of children with SEN and disabilities in Surrey. It's part of the National Network of Parent Carer Forums and aims to give Surrey parents a voice in the policy and decision making process for disability and SEN services.
As part of the table discussions we were asked to identify the top three challenges facing families with children with disabilities and SEN in the county. When each table's facilitator stood up in turn and read out their lists, almost every table had identified the same issue - information and support after diagnosis.
Everyone agreed that was is needed is an independent support worker who had all the answers to the questions that a diagnosis sparks in parents. This includes where to find information about assessments, financial assistance, support groups, access to services and education about how to help their child and so on.
When your child receives a diagnosis of any illness or condition, it is a very distressing experience that can also feel very isolating, especially if you do not know any other parents in your position. It can also, at the same time, be a relief that you were not imagining these symptoms and that you now have a name for the problem. This is particularly true when the child has a hidden disability such as Asperger Syndrome or ADHD. For a while, parents need to take stock, maybe reassess their hopes and expectations for their child. Perhaps they also need to grieve.
But then comes the stark reality that they have to take action to help improve their child's life chances - and that means finding accurate information and at a local level - who is a good paediatrician, which are the appropriate schools, does my child need an assessment for a statement and how do I go about that? How do I find out about occupational therapy or speech and language therapy?
There are lots of great volunteer organisations out there, but the problem is finding the ones that are right for you and your family. So, what is needed is someone who can be sympathetic and knowledgable and who can act as a support and a signposter, maybe even an introducer to that the family needs.
So, who can provide such a service? Who will fund it? These are two good questions - maybe someone reading this post has an answer. If you have any ideas how this can be achieved or what else a newly diagnosed family might need, please leave a comment...
She is also an experienced broadcast and print journalist & author. Tania also runs a PR, web & social media consultancy, SocialOro Media. She is a Rare Disease & chronic pain patient advocate with Ehlers Danlos syndrome.
Latest posts by Tania Tirraoro (see all)
- What’s a PRU to you? Busting the myths about alternative provision - November 19, 2019
- SEND Tribunal trial extended – but it needs more than just time to be a success - November 5, 2019
- Launching the SEND Community Alliance: An independent campaign group - November 1, 2019