Today the All Age Autism Strategy for Herefordshire and Worcestershire, is an agenda item on the Worcestershire Being Well Strategic group meeting. I am led to believe that this is something of a reorganisation and a newish meeting, but it sits beneath the Health and Wellbeing Board. Last year i attended the Health and Wellbeing board (here is the post from then). We were given the impression that the Autism Strategy is supposed to be recalled for their attention this year. It seems that instead of that platform, the ‘being well’ meeting is carrying out that function. I am unclear as the true purpose of the meeting, whether it is for updates or scrutiny. As i am unable to attend this meeting in person, and i wish to express personal views and not one of any organisation i am or have been associated with, i have been allowed to send a statement to the chair of the meeting. I have been told that the chair will read it when the agenda item is raised, i will wait to see if that does happen. I have pasted what i have sent below, and i have informed them that i will be publishing it. I have taken this opportunity to be frank about our circumstances, and as you will read, it is not naming names and accusing anyone specifically, therefore, i strongly believe that i have taken a fair and just approach to this, and whilst i am incredible angry, disenfranchised and under immense pressures, I have not gone in with a personal axe to grind – as would, be entirely understandable if i did based on my experiences, however, i refrained from doing so, offering a brief insight in to what is a massively discriminatory and demeaning situation, made worse by the organisations represented at this meeting today, and many more. I am just disgusted that something i naively out my name to (as pictured below), during a challenging disability period for me, has been totally useless to families like mine. The layering of complexities are all within, I wish it were not the case that i had anything bad to say, but here we are. (here is the strategy).
Statement for the wellbeing Strategic group meeting – Autism Strategy
Dear all
Last year I co-delivered the Autism Strategy at the health and wellbeing board. At the end of what was a strategic presentation illustrated by personal anecdotes, the chair thanked me for sharing the experiences of my family and hoped that when I return to update the board, that things would be better. I cannot let this opportunity pass, without giving you that update.
I am afraid to tell you that since the signing off of the autism strategy, I have struggled to find one area where the strategy is having a positive effect for my family. This appears to be consistent across many autistic families in the county, I will not speak on their behalf today. I will speak only about our situation and what has come to pass, in that year since I last spoke. As a family, all of us diagnosed autistic, with other diagnoses too (ADHD, CPTSD, Tourette’s, PDA, OCD), we have only experienced further negative treatment, further harm and direct discrimination, at the hands of the institutions purportedly here to support disabled people (including autism). I feel obliged to share my views, as I am a local face for autism recognition (even so far as I have a page in the autism strategy) and with this I hoped to be a face for changed, but this has simply not been the case. I acknowledge that many will not recognise my negative feedback, but be assured, this is because it is not exposed as the shame in doing so and ongoing fall-out by navigating and fighting a broken system, is silencing people like me to in submission. Many will not want to hear it, and if I described in detail the issues we face, we would be here for a very long time, time people just don’t have. Please don’t feel that I am being impatient by expecting an immediate impact of the autism strategy or suggest that ‘change takes time’ because I do accept that, however, the Autism Act and the strategy have been around for a long time in one version or another, and it is real life impact that is important to me. The fact that people are blindly ignoring existing frameworks and research is unacceptable and it is not about strategies taking to time to embed, because the accompanying legislation, such as Care Act, Equality Act, PSEDS, should by this point in time, be very well established into day-to-day working of all levels of local government and health care.
This time last years I was representing the ICB, but I am here today in a personal capacity. After over three years in the role, it transpires that for the duration of it, I was being mistreated by the system. As an autistic person, in a strategic, high-level role, doing a job that was advocating for the needs of autistic people being heard and met, I was not receiving the same acknowledgments back. This area of failings, should have been avoided and employment is an area of focus in the strategy (priority 3), yet the very organisation I represented was not treating me fairly or lawfully, in a role that I specifically fulfilled as an autistic person.
We are consistently beholden to the ‘system’ to get our needs met, our education, housing and health. Once families become involved in this cycle, there is no way out – this is not what life should be like, and this is not what the autism strategy or the Care Act are about. There are huge inequalities across the board and if I were to pick out each individually, again, it would take substantial time. Priorities 1, 2 and 4, are not having any considerable effect on any of these areas of failure we are experiencing. Instead of supporting change and championing skills of families and allowing them to proactively meet their own needs with support, people are left with insufficient help and treated instead with contempt for simply asking for what they are entitled to, in law. The law is frequently disregarded by many of the organisations around the health and wellbeing strategy table, and those organisations signed up to the autism strategy last year, in my presence, yet it is the case that those very people representative of their organisations, continue to let my family down.
I have struggled hugely with the duplicity of this, feeling complicit as part of a system failing my own family, whilst trying to help, but being put at a direct disadvantage by my ‘employment’ situation whilst doing so. I have been ignored and discriminated against, my family have been let down and the multiplicity of the issues, as life is complex for many, even more so for autistic households, we have been put in avoidable situations, and life made unnecessarily worse due to the failures of the system.
The Care Act in England aims to promote well-being and independence by preventing, reducing, or delaying the need for care and support, and minimizing harm. It emphasizes early intervention, focusing on helping individuals maintain or regain skills, and preventing needs from developing or worsening. None of this has been in the case for us, in fact the very opposite is true.
One of our biggest issues we face, in having our multiple autistic needs met is ‘Housing’. This effects our ability to access our health and therapies, education, social care, and meaningful occupation. For everyone, housing is considered the foundation of health, education and participation in society. However, for autistic people, it is more, it is vital to living a functional life. I have exhausted all avenues to deal with our issues on a personal level, but there has been a sustained oppositional attitude by leaders, rather than one of support and compassion. We have experienced inhuman and degrading treatment at the hands of this process, and had our family torn apart as a result of the Care Act 2014 not being respected. There is no holistic thinking, no joined up approach across sectors to meet needs. I have witnessed the turning of backs and the closure of discourse, while everyone tries to aggressively protect their own budgets, instead of working together to meet disabled family’s needs under the Care Act.
We have been let down for years, even legal process are impenetrable for people like me, and legal support is almost impossible to obtain due to punitive limitations and lack of capacity. There is no accountability and no justice.
I tried to encourage joined up working and to resolve our issues with the knowledge I have, but no one wants to hear it, everyone eventually turns their head, and hopes we go away. In each of the areas that I outline, I have expended incomprehensible emotional and physical energy. Senior sector leaders acknowledge that we have complex needs, and we are entitled in law to have these needs met, yet other Senior sector leaders, oppose and undermine expert opinion, and tell me to “manage my expectations”. It is for this reason I become exasperated; They are not my expectations; they are health and social care needs identified in law.
I tried to tackle the housing difficulties head-on and was met with ignorance. I tried to tackle my employment issue head-on whilst still retaining the role I loved and am good at, but it has got me nowhere in doing so. I have tried to work with organisations, and it has caused me and my family nothing but further detriment time and time again. This is why I feel that the system is worse now for autistic people than it was before the Autism Act and National and local Strategy came along, because now people just downright disregard their part in it and are allowed to do so without consequence.
I am happy to go into further detail about each of these areas and how my lived experience could actually improve things for families like mine, however, how could I manage that, when every way I turn there is another barrier in getting my own family’s basic rights actioned?
Bernadette Louise
Autistic Person,
Parent Carer (Children and Families Act 2014)
Carer (Care Act 2014)
