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.
Some weeks the up and down nature of life as an autism parent leaves you feeling a little drained.
The week started with a follow up meeting to a complaint about desperately poor practice that affected my precious boy and my disappointment at realising that what was considered unacceptable previously is now become just the way it is. Suck it up innocent young people with disabilities your life chances just got fewer because things are getting so bad that we have changed the goalposts again.
My involvement in the local health care policy forum saw me attend a meeting that was considered positive by some, but involved more talk of cuts in budget and provision. We are fighting not for the services, but rather the right to simply have our views heard.
The local initiative for autism services has resorted to type as the ineffectual private members entity it previously was.
Finally our failing education system sticks with the ‘ every thing is fine here’ mantra.
The daily struggle of supporting Andy bookends every encounter with authority and I’m tired of the dishonesty that affects my precious boy and so many others like him.
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.
Night 4 of Andy being unsettled. It’s got steadily worse and tonight he is currently bouncing off the walls. Notions of Christmas holidays relaxing at home seem to have evaporated before they have even begun and all of a sudden a couple of weeks is looking like a long, long time when yesterday I thought I was looking forward to it!
Here are my tips for unpaid Carers at Christmas and other holiday periods.
NEVER get seduced by thoughts of holidays and relaxing because that experience generally doesn’t exist for you. Keep your head down and your expectations set at your normal level. Avoid mainstream images of celebrations and festivities.
Do not let your guard or indeed your hair down. Stay work ready and alert at all times. Look after yourself and never make plans. Never complain it only makes you look bad and feel even worse.
Never, ever underestimate the lack of awareness or desire to even try and understand your life by the majority of those around you- particularly those who make a living from disabilities. Always be polite and remember your manners when seeking basic supports and remember despite the massive savings you make to the public purse , despite the fact you are a massive net contributor, other more able and responsible people will decide your worthiness for help.
Remember also that these very folk will avoid direct contact with people with disability at all costs and would struggle to last ‘ a shift’ doing what they demand of you everyday.
This post is dedicated to out of touch social workers, professionals, policy makers and politicians – you know who you are! Do try to open your eyes and seek some exposure to the lives of those you claim to act for.
At the recent Carers Parliament we were informed that all Health and Social Care Partnerships would be required to sign up to the Scottish Government’s Carer Positive scheme. If I picked it up correctly this is a policy aligned with the forth coming Carers Act Scotland. The policies of the Act won’t come into play until 2018 now and it is not entirely clear how much benefit it will provide. The legislation is badly designed and this means there is likely to be far too much wiggle room for local authorities to actually feel compelled to respond. It does help to raise the profile of Carers Issues however and that may very well be as much as we are going to get.
The Carer Positive scheme for employers will require some basic recognition of Carers rights and awareness of some of the difficulties experienced by working Carers.
People who care for a family member should still be able to pursue some degree of freedom to exercise the legal rights most take for granted. This includes being able to have interests and past times and some semblance of a social life and perhaps a relationship. It also means having ambitions and the chance to realise them in a career or by pursuing academic qualifications.
Despite the fact I work for a local authority and have done for over 25 years I have not fared well since my Carer responsibilities have intensified. Yes I have flexi working but this suits the job I currently do. It is incredible how many people in a social work setting appear to grudge me this. Last year my job role of over a decade was downgraded and my family have faced a very significant drop in income. I was encouraged to go for another post to preserve my earnings but knew this would tip my life work balance and have been unfair to both parties. In a local authority hierarchy is everything and I feel that both my skills and experience are regularly disregarded and over looked.
Sadly it is simply another disadvantage faced by unpaid Carers.
You can find out more about the Carer Positive scheme at the link below.