This past few days and weeks at Inspired by Autism have produced some of the most disappointing situations and responses to these situations, that I can remember.
Across a range of disabilities, situations and age ranges the one constant has been the fact that all responses have been simply from a resource / service perspective. The system is broken and even the pretence of meeting needs seems to have vanished. The systems are bursting with insulting and poorly thought out ‘ strategies ‘ that deliver nothing beyond their fancy names. Over paid professionals play the game and take the money from the public purse without a care.
Our local government structure is broken also and even the well meaning who want to serve their electorate are powerless due to unholy and political alliances.
It also appears that our government have quietly decided to scrap the Carers Parliament- not the best forum admittedly- but a small token of recognition , a day for Carers to experience a little of the life and perks that our MSP’s and FM have every day.
These events and facts lay me low. I fight these battles for those with no voice, driven by a hope of finding some justice, some small improvements. If I lose hope however, what message does that send to our families? So I must keep the faith but my faith is not in local authorities, councils, policy makers or politicians. No, my faith is in the commitment and resilience, dedication and love that unpaid Carers, spouses and parents show every day of their journeys.
I’ve been trying to comment on this annual phenomenon all week but have simply been too busy being a Carer. So before it’s shoved on the shelf for another year by those who have enough time and energy to celebrate it, perhaps I can make one or two observations? Ask a few straightforward questions?
Why are proper and legal Carer’s assessments so rarely carried out AND delivered on by local authorities?
Will the (delayed) Carer’s Act actually be robust enough to deliver any real change for those in the Carer’s role?
Will proper emergency and future plans be put in place with this Act?
Will adequate respite services be promoted, extended and provided to give every Carer a chance to recharge even once a month?
Everything else is window dressing and insult to a group of people who save the public purse an estimated £10.8 billion per year.
Feeling quite disappointed and disillusioned with the Autism Strategy in Argyll. Today’s meeting was cancelled and they have not met since November. The next meeting is the end of March. A year ago they relaunched the strategy with promises of real action. Nationally we were 5 years into a 10 year strategy. The Scottish Government then decided to reframe the goals ( that they had failed to achieve) into very vague outcomes. So far it has produced another written plan and well nothing really. Taking a four month break sends out all the wrong messages to people living with autism regardless of the reasons.
Today an advert for this event by Autism Network Scotland has been circulated. The people at ANS are very good people and in my opinion very knowledgeable people. It is extremely difficult to cater for the geographic challenges of Argyll and the limitations and lack of freedom that people living with autism experience but for most people from Dunoon – apart from the professionals- this event is almost impossible to participate in. With respect to make the sacrifices in cost, time and organisation to attend this event to be told about national ” progress ” that has failed to impact on our lives here in Argyll along with spin about the ” progress ” locally, that NONE of us have experienced is a big ask. While I don’t have the answers I could and previously have stated goals that would be meaningful and life changing for those living with autism in Argyll but I feel I am wasting my breath much of the time.
I have tried to be constructive and I have tried to participate and contribute while being heavily involved in caring for my precious boy, trying to help others and hold down a day job.
My offers of input to training staff have been rejected by our authority’s education department and I am tired and very disillusioned with the situation.
It would be much easier just to play along and say positive, nice things about these matters but this is not just a job for me. This is our lives and the life of my precious son and so many others like him. I implore you to interpret these comments in that spirit. I beg for no more ” window dressing” but rather real , if modest improvements that can be experienced by those affected in the short term who have waited so long.
No offence is meant but nationally and particularly locally here in Argyll the Autism Strategy is still failing to deliver.
This is my first blog of 2017 and the intervening time since I last wrote probably represents my longest break since starting putting my feelings on paper. I have realised that I need to blog but have simply been busy.
I’ve been busy supporting my son and others at Inspired by Autism and I’ve become involved in representing the public view in the brave new world of Health and Social Care Partnerships ( HSCP). This is proving to be a minefield of new terminology, graphs and figures. I attended a very good Autism conference recently too and found lots of these ideas and terminology there also.
A major problem for me is the tendency to consider services and those who use them as commodities and consumers instead of HUMAN BEINGS getting the help and support that has to be the very foundation of a civilised society.
So we talk of hubs, business meetings, system enablers and pathways for high resource individuals! ( or HRI’s – snappy eh?)
When I listened to a presentation recently about HRI’s I realised that we had lost a PERSON who met this description a while back. He was one of the kindest, gentlest and most beautiful of people. He had worked very hard his whole life to raise and provide for his family. He had been struck by personal tragedy during his life and in his final years had endured multiple and complex ill health. It would be far too simplistic to pick out a reason for his ill health. He wasn’t an HRI, no he was my children’s grandfather. Those who promote this new shiny world of health and social care would do well to remember that.
Lots going on this week in the quest for services, support and understanding for ASD. Some day it all needs to be documented publicly because much of what goes on is scandalous and can get me down. The brutal cuts that are coming are going to have a devastating effect on many vulnerable people who deserve so much better in a civilised society. For many families living with disability there are cuts on a number of fronts. I was informed this week that the local authority I work for will be imposing a substantial pay cut on me and many others. We will oppose these actions as vigorously as possible but last week’s election results have given something of a mandate for these types of cuts.
However there were some positives this week too. Today I found out I had scraped a pass in my second module of a post graduate certificate in autism. That’s two down one to go! Given what’s going on in our lives I was happy with the pass and the fact that my feedback stated ” The student does meet the basic criteria well and the content of the information meets the necessary standard. It is the presentation which reduces the grade of the submission.” Well I guess sometimes your presentation just goes out the window when you are an autism parent 😳
Now that the exams are over and I don’t start back till September I am looking forward to a long summer of partying 😄. Well maybe not! I remember my final exams nearly a quarter of a century ago and the crazy celebrations. Actually I don’t but I have it on good authority it was a wild night!
We also had another local autism support group this week and it is starting to take shape I feel. Slowly our numbers are building and it is great to have a chat and cuppa with other parents and carers. It is incredible the experience and knowledge that emerges at such events and I am proud to be part of it all. We hope to make a very positive contribution to the lives of those living with A.S.D.
Let me end by reflecting on and acknowledging the amazing things achieved every day by those with autism and their parents and carers. It is not always easy and the challenges are often great but the effort is easily worth it when we succeed. Whether that is securing a service or resource, overcoming a sensory or social difficulty or just getting through another day. I salute you all even if our authorities and politicians so often do not!
We are the parents of a beautiful and precious 8 year old boy who has severe autism. He has a globalised developmental delay and a range of complex needs. In order to meet these needs our ability to work has been reduced severely and we now rely on benefits to supplement our income. At the same time the demands on us have never been greater. We embrace our roles in life and are positive about our task even though we are constantly tired and our own health has been affected.
As a family we have a range of very basic and minimal supports that often leave us struggling to survive emotionally, financially and physically. The struggle for these basic supports has at times been immense and draining of what energy we have
left. As unpaid carers we estimate that we easily save the taxpayer in excess of £100,000 annually. Life for all carers is tough. We are just one of thousands in similar situations. Despite this the austerity cuts being imposed by all of the Westminster parties are being unfairly applied to the very people who can afford it least. Those living with disability make soft targets. They are often ill equipped to fight back and have voices that cannot be heard.
And yet we are an industrious nation rich in natural resources. Gifts that should rightly be used for the betterment of all our peoples are directed to the benefit of the rich and powerful while child poverty increases and vulnerable groups have benefits and services cut to the bone.
We hope in our lifetime to see a major redistribution of wealth in our country. We desperately want a fairer society for our children’s future.
We do not want to live in a society where the media is controlled by those in power and manipulates public opinion to vilify the vulnerable, the sick and those with disabilities to further their unfair austerity agenda.
We do not want to live in a society that is primarily about looking after yourself and getting ahead whatever the cost to our fellow citizens.
We do not want to live in a society where we spend billions on weapons of mass destruction or keep unelected peers in luxury and high status.
We do not want to be governed by an out of touch and often corrupt administration that we did not vote for as an nation.
We firmly believe that to have any chance of making these things happen we need to take control of our own affairs as a nation. We require a proper democratic process that allows us to form a government that listens and responds to ALL of its citizens needs.
As parents and unpaid carers these are the reasons we will vote YES.