If you’re disabled, you’ll know that almost every professional has a tendency to assign any problem you may have to your disability. You go to the doctors with a common cold and it’s automatically a symptom of cerebral palsy. Essentially, it’s the easiest box to tick because no further investigations need to be carried out. And when you are diagnosed with multiple conditions, they’re treated separately, as if one doesn’t have any impact on the other. Ultimately, this means you become a broken record because you have to start from scratch with everyone and educate them on why you might not fit their straightforward criteria.
As I said in my previous blog, last weekend I went to London to take part in a research consultation which focused on multi-morbidity. When I was originally invited to give my opinion and have my say, I had no idea what the term meant and to me, it sounded like something to do with dead people. After a bit of digging, I discovered that I was asked to attend because I fit into that category. I have multiple conditions; wonky legs, a wonky spine, wonky eyes and a wonky brain. Basically, I’m the definition of ‘wonky’.
The project, which investigates how children and young people who have multi-morbidity are treated by professionals within various sectors, is run by the Children’s Research and Policy Unit (CPRU), in partnership with the National Children’s Bureau (NCB), amongst other organisations. CPRU have been asked by the Department of Health to carry out the Programme because it is slowly being recognised that one size does not fit all. There can be so many services involved with someone who has multi-morbidity and it has a huge, often detrimental, impact of the individual and their family. Questions are finally being asked; what in the system works, how do we improve the bits that don’t, and, most importantly, how can everyone effectively communicate to ensure the individual’s best interests are being met.
This is where CPRU is perfectly partnered with NCB, who believe disabled children and young people should be accepted members of society. They work tirelessly to make sure that our voices are heard and that we are fully involved in decisions that affect us. Their research and evaluations influence government policies which in turn means they create a positive change for people with special educational needs and disabilities.
Both parties are passionate about making the voices of disabled people heard. They understand that disability doesn’t define anyone, they appreciate the complexity of disability and they empathise with the challenges we face. Above all though, they value the importance of working together to create equality and integration.
It was a fabulous day!