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'Extraordinary pressures on a limited budget'

Parents of profoundly special needs children beware the social work 'get-out' clause for the provision of your child's care needs. The title above is a direct quote from an email written by a social worker and shared with me by the mother who received it. That mother is a single parent who cares for her 14 year old son, severely learning disabled as a consequence of epilepsy. She has just spent the entire summer home alone with her son, her days and nights blending in to one as she cares for him through difficult seizures. Her ask for additional respite was declined. My heart breaks for her.

The social worker is friendly enough in the email but her message is delivered in the tone of one who couldn't fulfil the requirements of a shopping list, a sort of 'by the way.' She glibly reminds this mother that she already knows how to appeal and then continues with a detailed paragraph about her own work load prior to her departure on holiday. This mother urgently needs additional respite for her son but it has been denied because of 'extraordinary pressures on a limited budget.'

Parents should get use to these words and learn how to react to them. The message will never change. It is here to stay as the benefit system comes under increasing pressure, particularly in Scotland. But nonetheless it is unacceptable that the needs of our children with profound and multiple learning disabilities are not being met for this reason. Is it any wonder that this group is considered to be 'present but not visible' when their care needs are being ignored? They have no voice. They are the tragedy that is waiting to happen.

Yet we boldly announce via the press that the number of children in school requiring additional learning support in Scotland has increased in the last three years by 89% and crisis discussions in Government meeting rooms are held to determine how they are going to meet the need. Who are these children? Apparently nothing has changed in the definition other than the perception of those who qualify for additional learning support. I see them for myself when I speak in school assemblies about epilepsy. A headteacher sits behind a traveller's child, propping him up against her legs because he cannot stay awake. He has no routine, no normal bedtime and his dysfunctional life style means that he needs learning support. She apologises for the disruptive behaviours in assembly by others like him. It's just one example but there are many more. This extended group requiring additional learning support in school will disappear from future statistics for the learning disabled as they grow up and get on with life, in whatever form, because they can.

In correspondence with Scotland's Chief Social Worker who hides behind policy and refuses to listen to the reality, he states that: the assessment process is aimed at ensuring people have access to the services they need; it focuses on person centred approaches; the framework reflects messages received from people with learning disabilities about what is most important to them. One would have to ask where any of this is evident in the case I have outlined above and my case in point is by no means unique. Where and when were social services ever given the right to deny those vital needs, assuming they properly identify them in the first place, on the basis of  'extraordinary pressures on a limited budget?'

Furthermore, the Chief Social Worker's  theory that the framework, being 'Keys to Life,' reflects messages received from people with learning disabilities about what is most important to them inevitably excludes those those with profound and multiple learning disabilities who cannot communicate their preferences because they have no voice, they are ever present but not visible.

The model is flawed. The most vulnerable in our society sit at the top of the pyramid of need, yet local authorities prioritise the majority at the base of that pyramid, maximising their reach across the learning disabled population but failing to meet the needs of the most vulnerable. This 'economies of scale' approach must change - those at the top of the pyramid should always be prioritised over the rest and if the cash runs out then, I am sorry but the less needy will have to go without. I have no problem with that message because that is the message that all too often  local authorities are sending out to our deeply needy and vulnerable families, and without conscience. For me there is no moral dilemma here and for those who can't see it I will say this, when the tragedy happens I will be the first to point the finger.

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