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.
I am happy to be able to announce that Inspired by Autism officially received charitable status this week. I have now been going for almost 4 years and have been continuously exploring how I can be most effective and best continue to contribute to making improvements for autistic people and their families. There have been lots of challenges and highs and lows but I am very driven to keep going. Charitable status feels correct as this was never about being a business in the obvious sense of the word. To maintain a truly independent perspective that ALWAYS puts the wellbeing and interests of autistic people first is the most important principle at Inspired by Autism. I will NEVER compromise that for funding or status from those in power.
Thank you for your ongoing support.
Inspired by Autism’s charitable objects are:
– the relief of those in need by reason of age, ill-health, disability, financial hardship or other disadvantage
The company’s objects are the relief of need through:
• Raising awareness of autism spectrum disorders, challenging discrimination and providing peer support groups for parents and families with children on the autistic spectrum;
• Influencing policy and providing independent advocacy and advice, acting as a voice for families at local and national level; and
• Providing autism awareness training to businesses and professionals.
Many years ago when I decided to go into social work, I did so with a very genuine , if naive, desire to help people and genuinely make a difference. While proud of some bits of work I have delivered, overall social work has been a disappointment as a career choice much of the time. The changes in the role, due largely to resource driven policies, have in my opinion led to there being very few opportunities for using individual assessment skills, initiative or integrity.
Instead rules and processes, weakly hidden behind promising sounding jargon, are the cornerstone of a failed and broken system. Local authorities are allowed to ignore or re interpret legislation without challenges and new policy is written in the new meaningless language of the day.
While hugely frustrating much of the time , it is at least liberating to be able to social work from the heart in my role at Inspired by Autism. It feels right finally and it is a privilege to work from the perspective that puts autistic people and their interests first. I have come to realise that fighting for even small improvements for autistic children like my precious boy is worth more than any attempts at career advancement or increases in salary.
Perhaps someday mainstream policy and procedures will rediscover what should be their prime purpose.
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.
On my way back to work today after a period at home and I’m in a reflective mood.
During my time off I have been involved in several DLA applications and appeals for children with autism. Returning to the ” normal” world of work immediately removes me from the constant duties of supervision and Care that are the daily responsibility of Carers.
It is hard to accept why the DWP are so reluctant to acknowledge or believe the extreme nature of autism and the tireless support Carers and parents provide.
Andy has been constant in his needs for support as well as wondrous in his beautiful autistic way of being. I am physically absolutely shattered but also as motivated as ever to respect and support his way of being in this world. We had some lovely moments over the last few days together. At a local leisure centre that we frequent Andy simply wanted to sit on a child’s horse ride and observe the world around him. I sat with him and watched him take in and process the sensory stimuli and activity around him. With understanding he copes in a world that is difficult and highly challenging to him. Awareness and acceptance are crucial to his wellbeing.
I will never stop fighting for this.
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.
An end to austerity that punishes the poor.
A new fit for purpose ferry for Dunoon.
World peace and respect for all peoples, faiths and cultures.
That more people experience the joy of sharing their life with a dog.
Frank’s Law to be adopted by the Scottish Government.
A recognition of the problems in mainstream school for disabled children.
More (some?) honesty, listening and integrity from our politicians, councillors and heads of service.
A wide spread social model approach to disability.
Greenock Morton to win the Scottish Cup.
Lots of new local councillors in Argyll.
I have been trying to take on too much recently in the role of autism advocate and have in turn been less able in my carer / dad role. The fact that Andy has had a cold and has required lots of love and reassurance has been a “heads up” for me. With his increased needs comes a chance to be reminded of the rewards Andy gives back in his joy, happiness and love. My dedication to him and love for him is the most important thing in my life I was reminded. He is the reason for everything I do and I would not have it any other way. I have therefore taken the decision to try and take a step back from the futile business of trying to influence those at the policy making level.
The facts are there if they were truly interested. I don’t believe they are.
And so my priorities will be immediate and local issues from here on.
Round about Andy’s care this week I was privileged enough to be asked to speak at a local launch of part of a new piece of forthcoming Carer’s rights legislation. It was well attended and received though sadly NOT ONE invited councillor, politician or social work professional found it important enough to attend. I will let you draw your own conclusions!
We also had another very busy drop in event for local autism families. It went well – informative, relaxed and comfortable. We try to support each other emotionally and practically. The need for our group had never been more pertinent.
Unlike the chicken and the egg there is no dubiety over what should come first when considering resources for the vulnerable in our society. Our local authority is about to embark on a “consultation” with the public over what services to cut. Unfortunately the proposals put forward by the council leaders will have an unfair affect on children with Additional Support Needs (ASN.) Many other groups could be similarly affected it has to be acknowledged. The proposed axing of a large percentage (45%) of ASN classroom assistants will impact on vulnerable children at a crucial point in their lives. Presumably the powers that be have decided that these children may just have to manage without and yet the lack of adequate classroom support is already a hot topic at our local support group and beyond. There is a legal requirement surely that such needs must be met? Just what was the rational in the closed committee that justifies potentially ignoring children’s Additional Support Needs for education? What message does this give to children, parents and professionals about the validity of these needs? We are talking here about serious life long conditions like Asperger’s Syndrome, Dyslexia, ADHD, Tourette’s Syndrome, Down’s Syndrome, Sensory Impairments and Physical Disabilities. The small amount of Educational Psychology input is also facing a a proposed cut. So much energy and effort has went into raising awareness about disability and the issue of ASN that it seems incredible that this is even being considered. Surely senior management posts should be stripped to the bone before considering removing this essential support?
Perhaps to expect a truly ‘needs led’ service puts you in fantasy land in these days of brutal cuts to welfare and the wellbeing of the most vulnerable. In all my years in social work, social care and as a parent I have never came across a service that fully merits that description but some reasonable compromise must be strived for surely? To fail to acknowledge that ASN needs exist or that every child has a right to suitable education is morally indefensible.
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!