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Out of My Comfort Zone

I don't do jargon. I never have. In my role as founder and fundraiser of MMT I have rarely attended any conferences but increasingly, albeit reluctantly, I find myself as a voice for profoundly learning disabled children and young adults and their families and I am now attending meetings that are taking me well and truly out of my comfort zone.

Watch and listen, I tell myself and I do. It takes me a while sometimes to understand the detail and to grasp the issues. Deciphering the endless acronyms and abbreviations that are used is a major challenge. I can't bear them - GIRFEC, CSP, ASL, CLTA, Ed Psych - it goes on!

I wear two hats at these meetings, my MMT hat and my mother of Muir hat - Muir, age 16, has profound learning disabilities. Yesterday I attended a conference in Edinburgh about Additional Support for learning (ASL). As an aside I just want to say that the cost of attending this conference was outrageous. However, sometimes needs must but I hope, not very often. The conference was focused on the Scottish Government's approach to Getting It Right For Every Child (GIRFEC). I understand that this includes Looked After Children (LAC), including children with profound learning disabilities.

You can imagine how shocked I was when within the first hour of conference proceedings David Watt, Head of Education said 'Looked after children have less good parents than others.'

I wrote it down.

I couldn't believe it.

Muir is a Looked After Child with profound learning disabilities. Looking after him is challenging to say the least and we have to battle with social services on a regular basis to ensure Muir's needs are met - but less good parents, I think not. I was deeply offended.

Whilst I am sure it is not what he meant, it is what he said. I quoted him in a tweet. It was retweeted. It's on record and I am still reeling in the wake of the shock. It is the greatest evidence yet of the fact that Getting It Right for Every Child and the Children and Young People's Bill is in danger of overlooking the needs of the profoundly learning disabled. It scoops them up as though they are the same as all other children: that they are capable of being successful learners; that they will be confident individuals; that they will be responsible citizens and effective contributors. How I wish children like Muir could achieve all of the above but in reality they are not the same as other children and none of these measures of achievement by Scottish Government and Education are relevant to them.

So what is relevant? Profoundly learning disabled children require a level of care and support that is beyond the ambitions of the policies so far outlined by Government. If we look to the coal-face where social services are aggressively pushing Direct Payments and Self- Directed Support as the best way forward for families to care for their learning disabled, we see exasperated parents, worn down by eternal battles with councils to secure minimal financial support, worn out by lack of respite, worried about the impact on siblings and terrified by the future.  Social services talk about diminishing budgets all the time. They avoid proper assessment of need because that would result in 'rights' that they are determined not to afford. In my council the players move around every few months. No one is in post for long enough to allow any meaningful relationships with families, most are part-time and often unavailable and many revert to long periods of absence due to sickness and stress. It could not be more dysfunctional and less supportive of our families desperately trying to care for their profoundly learning disabled children.

Last week I attended a carers meeting. We had no idea what it was about until we got there. The aim of Children's Services was to introduce the concept of Self-Directed Support and parade the services of charities offering support to families. One astute mother, in receipt of a direct payment of £8.75 an hour for respite care, asked what that would buy her from a service provider and the answer was just half an hour of respite care. Social services asked us to work together as a community to help ourselves and to share resources. Examples were given of small grants enabling the purchase of garden toys that resulted in dozens of children playing together in one garden, a distressed carer was given a small grant to buy a garden shed to escape the daily burden of caring, without actually leaving the property. Statistics were quoted suggesting that 1/3 of families in receipt of respite payments saved them up and didn't use them. How this can be a good outcome I will never know. Frankly, what I witnessed last week confirms for me that we have now well and truly lost the plot.

Returning to yesterday's conference, I listened and I learned and I considered what was being said by all speakers throughout the day and I was deeply uncomfortable on behalf of our children that there is such an overwhelming ambition for inclusion. Special needs schools are merging with main stream primary schools, teachers are expected not just to teach any more but additionally become experts in additional learning support, sometimes for severe and complex needs. At Ballumbie Primary school they don't have school trips unless everyone can go.

Of course, I am always a lone voice when I speak up but often I know I say out loud what so many others are thinking but dare not voice. I don't represent an employer. My views are my own.  I am only answerable to the children and families that are managing a profoundly learning disabled child or young adult. They may not all agree with me but I am uncomfortable with inclusion to this extent and I believe that we are now compromising the education of those children without a need for additional learning support, whilst we prioritise those who do. I would not wish my three children to be educated together because their needs are very different. It is not about including the profoundly learning disabled within society but about maximising the potential of every child and sometimes it is just not possible or appropriate to do that under the same roof with a broad spectrum of teaching skills. The conference Chair said that inclusion is largely about disabled children and not about those with profound learning disabilities. This is not what I have witnessed as I visit schools speaking about epilepsy as part of MMT's Mum On the Run for Epilepsy campaign.

The last point I want to make is about our learning disabled who are developmentally delayed and therefore learn at a very different pace to most children. The age of transition for most children is somewhere between 16 to 18. Learning disabled children could very well benefit from continued education way beyond these years, in an environment that continues to offer structure and routine enabling them to thrive. Instead, they exit education and return home, to be cared for by families who are supported by inadequate direct payments, soon to be self-directed support and the reality is that they will in time be forgotten. They don't fit in and nowhere is their proper provision for them.


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