Inclusion Now 48

Inclusion – a Welsh perspective

Tara Flood talks to Adele Rose-Morgan about life with her young son, Rhys

Tell us about you and your family, particularly Rhys and the difference he has made to your life.

Rhys is 11 and has two older siblings, Abi, 19, and Scott, 17. Before Rhys was born we were a fairly ordinary family. For the first year of his life things seemed fairly typical. Then we noticed he wasn’t reaching his milestones. Our journey from then on hasn’t been that typical. Our stress has mainly been born out of engaging with services and organisations that are there to support you. Rhys has always been a delight to all of us and continues to be. He is great company and makes us laugh. I feel that he has really helped my older children feel more secure and loved too. He completes us!

As a parent of a disabled young person, how has your thinking about disability changed?

My training and background was teaching adults with learning disabilities and I was trained during the ‘All Wales Strategy’. After having a child with additional needs I have been frequently shocked at the lack of value placed on children with disabilities! I find the system disables children and doesn’t allow children with disabilities to reach their potential – thus a very unequal and challenging path!

Why do you think it has been important for Rhys to be included in mainstream education?

Including children with difference benefits everyone. The children with additional needs have good role models, whether it be speech, behaviour etc. Placing all children who cannot access mainstream education together in a separate place will emphasise difference and ensure a segregated life with ‘their own kind’. When all children occupy the same space the mainstream children learn about difference. These children will be the decision makers of the future and can change the future for children with disabilities!

What have been the challenges?

The biggest challenge has been the lack of training of professionals with regards to inclusion. Inclusion means many different things to professionals and often parents, without knowledge, accept what the professionals tell them. Also I have found if a child has a learning disability they do not matter to the system. If a child can achieve A-C grade at GCSE and has good school attendance then they matter. At special schools they aren’t given the same constraints – this is great in that they don’t have the pressure but not great when it comes to standards and charting progress.

Initially Rhys had a very late diagnosis of deaf due to diagnostic overshadowing, where the paediatrician felt Rhys’s lack of speech was due to Global Developmental Delay. When we were told Rhys was entitled to the top allocation of speech and language therapy of twelve hours per year we were delighted, as at five he had had less than a handful of sessions and was allocated six hours per year! When we asked for the twelve hours to be written into his statement it was refused due to his overall learning ability which led us to tribunal. Rhys won 24 hours of therapy with more follow up time on top. This took another two years to be properly in place which has been upsetting.

Also we get the sense that although he has severe/profound sensory neural hearing loss, the professionals want him in a learning disability setting with a watered down deaf intervention. Mainstream schools have a lot of targets to achieve which affects their ability to focus on children with additional needs. The children who are not ticking the boxes are sidelined to special schools. No proper training is given to teachers, who are expected to recognise symptoms and refer children. Then there is rationing of educational psychologists so that only the pupils creating the most difficulties to the system get assessed. Also rationing of speech and language therapists who are essential for loads of children with additional needs.

From a parent’s perspective what does education law in Wales say about inclusive education?

At the moment we still have statements in Wales but this is soon to change. Statements only provide some reassurance for a child’s education. Even with a statement a child may not be able to reach potential because assessments are based on budgets and appropriate interventions are rationed. Access to assessments is not timely either. These things impact on a child’s potential greatly! The new individual development plan proposed in the Additional Learning Need Educational Tribunal (Wales) Bill will widen legislative protection but cuts and the fact that schools now manage much of the budgets for special education are already affecting children with SEN. The bodies making decisions talk in terms of there being mainstream pupils and then the children who need special schools, segregated in another part of town. As mainstream schools are finding their funding dwindle, as targets for mainstream schools are getting more inaccessible for children with needs and more schools are turning away children who need extra support citing inability to provide, local authorities are filtering them into special schools which are full. The answer is to build more very expensive special schools. Nobody seems to be looking to improve the resource to mainstream schools or challenging the targets schools have to adhere to which make them inaccessible. Children with additional needs do not matter to the mainstream system – they are separate #notinmybackyard #outofsightoutofmind

The Welsh Government adopted the social model of disability over 15 years ago but you are unlikely to see this in any of their policies, laws or systems!

What advice would you give other parents starting on the inclusion journey?

I would tell them to read up on the UNCRC and UNCRDP. Realise your child’s right to be included as a human being. Expect high standards from professionals and keep reminding them of your child’s rights and the social model of disability. Don’t be surprised when you get a blank look! Often they have never heard of this or need time to process it in the context of how they provide services for your child. It will not fit into the system they are expected to skip to! Inclusion is more than placing children in the same space as more typically developing children – inclusion is about valuing all children enough to provide high quality teaching for all.

What are your hopes and dreams for Rhys’s future?

Rhys’ future is uncertain due to his degenerative deaf/blind condition. We do not know when it will happen. I wish for him to continue to be content and happy. I wish for him to have a life of belonging to his local community so that when the inevitable happens he will have loads of connections with people. He likes to be of use – this is why we strive to get him as upskilled as possible so he can achieve. I want him to feel fulfilled in whatever he does, the same as I wish for his brother and sister. Rhys loves to help and wants a job when he gets older. His dream at the moment is to be a policeman.

Lastly we were wondering if Rhys could say something. If he wants to?

Rhys loves his life! He loves school and having lots of friends. He loves drama class and recently got his silver award for being with the drama group for two years! He swims and has his 400m certificate for that, and other skill badges. He loves riding his bike, especially going fast!! He loves his family and misses his brother, sister and dad whenever they go away. He is also a member of Mumbles cub troop. He especially loves ice cream – in fact there is very liitle about life that Rhys doesn’t enjoy, he loves every ounce of it, absorbs it like a sponge and gets so much from each minute – we all have a lot to learn from him!