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On Sunday morning, as I woke to two of my children jumping on the bed excitedly with cards and homemade gifts, I had cause to reflect on my own unique journey as a father. My third child, who is my first born, could not jump on the bed, had no card or gift and could not say ‘Happy Father’s Day, Dad’. She is thirteen, has a profound intellectual disability, physical disability and complex health problems.
This week, for those of you who are not aware, is Learning Disability Awareness week, when charities like Mencap, BILD (British Institute of Learning Disabilities) and the Foundation for People with Learning Disability try and raise the flag a bit more for this group to persuade society as a whole of the value, vulnerability and needs of people who happen to have an intellectual disability.
So my first question is who comes into your mind when you hear the term learning disability: child or adult, what level of dependency, additional health needs or not, care needs, behavioural needs, working or not, in a relationship? Sorry…that was loads of questions but this is just to ask you to reflect on your reference point because I think that will determine much of the rest of your thinking.
My second question is what do we need to be more aware of in this awareness raising week?
Well firstly that people with learning disabilities, of all ages and of all severities, get a fairly rough deal in life……and we are responsible for some of that. We know that people with learning disabilities have inequitable access to healthcare, have poorer general health and die prematurely all of which is entirely preventable.
Secondly society itself disables people…..by our fearful and awkward reactions to people, by our desire to have people grouped together and out of sight in institutions, by not adapting our physical environment and opportunities to include people, and by making presumptions about dependency rather than being creative about solutions that will lead to greater independency. Intellectual disability is not an illness that needs to be treated with medicines or in hospitals.
Thirdly people with intellectual disabilities are first and foremost people, with the same needs and rights as the rest of us. They are whole people and cannot be divided up into constituent bits. It is artificial, and causes no end of problems, when these needs are divided up into social needs, health needs, educational needs, recreational needs, personal needs, employment needs and care needs. Too frequently families are left fighting to have their needs met and are caught in the middle of a tussle where different agencies are justifying why others, and not they, should be meeting the need.
So it was a very welcome development a few months ago to see the Children and Families Act make it onto the statute books. For the first time people up to the age of twenty-five will have a right to a joint assessment of their need and one plan, that can be enforced legally, funded jointly through care, education and health sectors…..the EHC (education, health and care) plans can potentially lead the way to a more inclusive and less disabling society. My hope is that this will start to both see and assess people with learning disabilities as whole people and detail their needs and how they will be met through a genuine whole system approach. Ultimately it is about the system seeing children and young people with learning disabilities a little more like their parents see them.
So my eldest daughter was unable to join in the Father’s Day traditions in the same way as most children. She was able to smile and excitedly move her arms when I went in to say ‘good morning’ to her. She did it in her own way…and it was just as valued. I hope that during my tenure as NCD for Learning Disability that the SEND (Special Educational Needs and Disabilities) reforms in the Children and Families Act will just be the first of many changes that will see people with learning disability as whole people with the same rights to health and access to those things that determine good health, as any citizen. I will hopefully have many more Father’s Days in the years ahead where I can be increasingly confident about the society we are creating that will recognise the inherent value of individuals in its actions as well as its policies.