The word ‘blog’ derives from the phrase ‘web log’ which suggests an online diary. In this sense I’m perhaps not a real blogger; while my posts sometimes include background information about on-going aspects of Dylan’s care, I tend to foreground reflection rather than diary information. Last week, however, this proved challenging: I had planned to reflect on accessing short break provision but was overtaken by real-time events when Dylan’s short break provision broke down while I was writing the post.
How to maintain a reflective voice when you’re in the thick of it? The material which I thought was illustrative background (i.e. Dylan’s experience) wanted to move centre stage into the foreground. I tried to maintain my reflective distance last week but it meant there was a bit of an elephant in the room.
If you have been following this blog you’ll know that I’ve been battling with the funding and policy environment on Dylan’s behalf this year. In England, currently, autistic adults may be eligible for support from one or more of education, social care and continuing health care budgets. There are, however, a number of problems (at least in my Local Authority) with making information about these systems available to families.
All school leavers with a statement of Special Education Need (SEN) for a learning disability are entitled to continuing education. In the very near future I will focus a blog post on this because it has significant implications [I have since done this: you can read about it here]. It is my contention that Local Authorities are currently failing in their statutory duty to provide this, particularly to people who present with high or complex needs. Dylan was not offered any education when he left school last summer and much of my effort in the last year has been directed at lobbying for the development of appropriate local provision. Social care and continuing health care funding may also be available for young autistic adults depending on level of need (determined by assessment) and I’ve also been pursuing these over the last year.
In a recent post I compared these three funding streams to a three-legged stool. In Dylan’s case, the stool was broken: nine months after leaving school he still did not have access to the education provision to which he was entitled; his continuing health care needs had not been assessed; and his interim social care payments (from which I was paying for a day care centre and one overnight break a week) had stopped without warning or explanation. I had been living in a place of quiet despair about Dylan’s care all year but in April I wondered how much longer we could keep going.
At the end of last month Dylan’s social care payments were reinstated (after repeated phone calls, emails and a letter to Nick Clegg, my MP) on an interim basis until the end of August. Although this is only temporary funding it is a huge relief; without it Dylan would not have been able to access any day care or short break provision over the summer.
This meant that I could focus on developing a more permanent plan for Dylan from September (which you can read more about here). The assumption, over the last year, is that this would need to involve a combination of education and social care. Progress with the development of appropriate education in the city is, however, slow and out of my hands. Will it be ready in time? I asked the man from the council couple of weeks ago. Yes, he reassured me; something would be available for Dylan after the summer. But how will I know it will be appropriate I asked if it doesn’t exist yet? Oh it will be, he said. This will all unravel in September, I thought to myself. I had no choice, however, but to plan on a promise. Or so it seemed. But then last week (o halleluiah!) I heard that Dylan had been approved for continuing health care funding. Hopefully I am near the end of my long journey to secure appropriate support for Dylan as an adult.
This is breaking news; I hadn’t heard that Dylan had been approved for health care funding when I wrote about short break provision in my last post. The news about Dylan’s funding may alter the approach to short breaks I take in the future but the current crisis (i.e. the one which emerged last week) is about providers rather than funding.
I was so concerned to stay focused on the long view of short break provision last week that I dodged the current crisis a bit, or rather told myself that I wasn’t yet in a position to reflect. But the situation is this: the short break providers have decided that they aren’t able to accommodate Dylan any longer given his needs. Dylan’s short breaks were located in a small residential house which wasn’t a suitable environment, particularly given the profile of other service users and staff capacity. As I noted in last week’s post I was sceptical from the outset about the suitability of the provision.
Needs change and sometimes in a way that requires more not less support; the reality is that placements can and often do break down. I’m glad that Dylan’s short break provider was supportive and sensitive throughout: they communicated honestly; never criticised Dylan; focused only on their capacity to support; and responded to my request for emergency cover for this weekend so I can fulfil a long-standing engagement.
I can still see an elephant
But why did the placement break down? Well it’s jumping. That doesn’t sound very challenging I know but actually it is. I’ve written a bit about Dylan’s tendency to jump here as part of a review of Naoki Higashida’s The Reason I Jump. If only Dylan’s reasons were the same. I don’t think they are but I don’t really know what does cause Dylan to jump. I’m baffled. [I have subsequently reflected a bit more on Dylan’s jumping and suggest a surprising possible explanation here] .
Dylan has always jumped a bit; in the past I’ve assumed this was frustration at not being understood or at things not happening as he expects. I’ve worked on the assumption that behaviour is communication and if Dylan jumps then the onus is on me to find a way to understand what he needs. I like the expression ‘behaviour which may challenge’ as it acknowledges that what one person finds unacceptable may be tolerable to another. I have tolerated Dylan’s jumping in the past. I don’t mean to suggest that I never intervened; I have had a long campaign about not jumping in upstairs rooms. I have spent years flying up and downstairs to respond instantly to Dylan’s jumping. The behaviour may not always be appropriate but it has never been challenging in the past. Recently, however, Dylan’s jumping has become much more difficult in that it is out of control and, given his size and strength, potentially dangerous. I’ve been responding to incidents on and off for three or four months now, without significant concern, but like the elephant in the room it is no longer possible to ignore.
I’ve started a chart. This makes me feel as if I have my toddler back again; it’s something I did when Dylan was little. So far the possible triggers for Dylan’s jumping include: Tuesdays; really sad scenes in certain films; change of routine; lack of routine; and change of support person. However, the GP suggests it could be neurological (the jumping is often preceded by a trancelike state). Equally, it could be his age: many teenagers and young adults develop behaviours that may challenge – it is not exclusive to autism. Twenty is a difficult age: that’s certainly when I was at my most difficult. The possibility that there could be an internal trigger makes me feel a bit helpless. If it were an external trigger – something in the environment – then if I could only identify it I could try and help. Currently, though, with incidents unpredictable but happening every other day and in the community as well as in the house, there are significant implications for Dylan’s support [I reflect further on Dylan’s charts here and here]
Becoming an elephant
I cannot help but be struck by the serendipitous timing of Dylan’s funding being confirmed amidst all this. The behaviour has implications not only for the type of support Dylan receives but also his weekly activities and risk assessment. The coincidence of need and funding has, for once, been helpful. I will need the strength and skin of an elephant to support Dylan through this though; the sense that I can no longer reach or make a difference to Dylan when he is consumed by the need to jump is very difficult. I try to remind myself that many parents, at some point, experience such feelings of helplessness about supporting their growing child. As Dylan becomes an adult he will no doubt continue to need different types and levels of support; perhaps I have done as much as I can, for the moment, by securing the funding which will allow him to access this.
The photos were taken at zoos in Warwickshire and Kent during 2012-13.
For an updated summary of my battle to secure adult-sector provision for Dylan please see this post: