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I am Kate, mum to Wilf, my son with complex needs and mental incapacity. We live in Aberdeenshire.
As a result of our own experiences, our family is supporting Johann Lamont MSP’s Disabled Children and Young People (Transitions) (Scotland) Bill. We feel strongly that the legal right to a transition plan and a transparent transition process which compels the local authority to be collaborative, clear and accountable throughout all their processes and to meet needs as assessed, would help eradicate the undesirable, opaque, crisis-led decision-making, as experienced by so many families.
We hope it would also mean no-one else experiences behind-closed-door decision making regarding the care of their vulnerable young person with support needs, like we did.
As a younger child, Wilf attended a hard-won out-of-area educational day placement at Camphill School, Aberdeen, about an hour from home. For the first time he was settled, included, fulfilled and supported in the appropriate, enriched provision among friends. The only real negative was that he found the long journey and daily transitions home difficult.
As he grew-up, went through puberty and became a tall, strong teenager, he became harder to manage and ever more isolated at home but was still settled at Camphill.
We struggled to cope with the daily transition ‘overload meltdowns’ and the decade plus of disturbed nights. In crisis, when he was in S4, we applied to our local authority for a weekly educational placement, coming home at weekends.
A six month in-depth holistic assessment involving all his supportive case-holder professionals, and included ourselves, culminated in a multi-agency planning meeting, where the proposed change was unanimously approved and recommended as the best way to meet Wilf’s evolving needs and our reduced resilience. When Wilf was 16 we had to go before a judge and become his legal guardians, as he was now regarded as an ‘adult with incapacity’ under the law.
To our dismay, this unanimous recommendation from the multi-agency planning meeting was rejected behind closed doors by a local authority panel who make decisions on additional support needs, with no expertise appropriate to his profound disability, who refused to meet Wilf or ourselves.
They also refused to offer a justifiable explanation which we continue to pursue.
As a result, the long-term, carefully planned, appropriate care pathway which would have naturally evolved into a sustainable adulthood, was simply overturned. No alternative long or short-term plan, nor alternative provision was forthcoming.
We were plunged into despair as all hope of help vanished. My own health significantly deteriorated further, as a result of this rejection. After a few more very challenging months, adult services, seeing our struggle and having contributed to the original assessment, stepped in and offered the same placement, but without the educational element he was entitled to.
As his guardians to be forced to choose between his education and the care his significant degree of impairment requires was a very stark and bitter decision to have to make - - and one no mainstream parent would ever have to experience.
However, with regret, having prioritised his care needs, the relief as the plan became reality was enormous and the result has been very positive and successful.
Wilf is now attending wonderful Camphill, on a young person’s placement Monday to Friday and comes home for weekends - exactly as recommended by all those who knew him. He has never been happier or more settled.
This pragmatic, very welcome, but unplanned solution, required an immediate, emergency, premature transition from children’s to adult service and a loss of rights and services.
Please support Johann Lamont’s Transition Bill to ensure this type of experience and planning is not the norm. Please use the template letter to write to their local MSP asking them to support the Bill.
Other articles published in our December 2019 newsletter
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