I attended a workshop this week on the topic of emergency planning for the care of my precious boy. This was part of a Scottish Government initiative being piloted by Enable Scotland and will hopefully be part of the forthcoming Carer’s Bill.
Although we were focussing on emergency situations, a broader dimension of future planning is also being considered. The workshop was very thought provoking and as an autism parent I welcome the whole idea, although for us and many like us the future can be a disturbing prospect. Contingency planning has become part of our lives on a day to day basis and I would say helps considerably but A.S.D. still has the capacity to throw up unforeseen challenges. Things are seldom dull!
The trainer mentioned a pivotal moment for her when an elderly carer had remarked that she often felt it would be better if her loved one died the day before her. Sadly that sentiment resonates with many carer’s. It raises the question I have contemplated often – who would care for Andy like we would? This whole issue is compounded by the difficult times we live in and the ideologies imposed on us by governments and media. My son’s future in the hands of the current Westminster administration fills me with dread frankly. When I have the energy and will to face our future I often prefer to see it through the fantasy of becoming wealthy. The other thoughts are often about the horror of my precious boy ending up drugged in some medical unit. The latter gives me all the encouragement I need to keep fighting for his rights and wellbeing.
So yes indeed I am very much in favour of having planning discussions now while I am fit and able. Frankly I hope vital services like social work and education will engage in this type of process but the signs have not been encouraging thus far in our journey.
A statutory obligation will be needed I fear to even bring some to the table. There are none so blind as those who will not see – for whatever reason!
The complex care needs of so many vulnerable groups is so often underplayed. The value and worth of the carer’s contribution to society is often both taken for granted and undervalued. And yes a plan is only that but at least it allows the will of carer’s and family to be recorded and a process where some of our fears might be addressed. For me personally it would help enormously.