I have never been busier at Inspired by Autism. The 10 hours I have pledged to the project are getting stretched way beyond this nearly every week. Sometimes it is a bit much and yet I still feel the desire and drive to do my best. I could and would never want to let down any person or family struggling with the lack of awareness and injustice that seems to characterise so many authorities and services these days. The small but significant improvements that I can make to people’s lives are however a great reward. I feel at home with the social enterprise model.
Health and Social Care Partnerships and their governors, the Integrated Joint Boards are flawed. They are flawed because any perceived benefits of joint working are overshadowed by the reduction in budget and the need for cuts. They are flawed because of how they have been set up and structured and how there is a lack of accountability of their actions. Indeed the politicians and policy behind them are flawed because their prime objective is the saving of budgets. Those extolling the virtues are selling snake oil. They know the cost of everything and the value of nothing.
The challenges for people living with autism have never been greater and the need for independent support and representation have become virtually essential to a positive outcome today.
At a personal level the HSCP I work for have decided that social care training is now reduced in importance. Proof of this is the 10% plus pay reduction that has been imposed on me and my family while my workload has increased greatly.
To be honest sometimes I think I should be trying to earn more money for my family but I take much pleasure in the knowledge that social enterprise is different. It is about benefitting the community and improving life for the people who live there.
The impact of social enterprise is measured not solely in monetary terms but also on the positive change to the community. Local authorities, health boards and HSCP’s are simply about money these days. From the massive salaries and expenses politicians, senior managers and heads of service take and their desperate struggle for self preservation, to throwing their weight behind poorly thought out and untested initiatives that sound and are too good to be true, there is a complete lack of consideration for the wellbeing of the individuals their posts exist to serve.
If those in positions of influence could adopt a little of the social enterprise ethos perhaps the situation locally and nationally would be a little less grim.
Jen and I are as hard working and committed as the next carers but we are only human and get tired and worn out sometimes. The constant ups and downs, the demands of Andy’s care needs and all the usual stresses and strains of family life can leave us feeling flat and worn out sometimes. Even with us both pulling our weight and help from family, carers need help and support. The school holidays can be particularly difficult and often we feel greatly stretched at this time of year. We are feeling it just now even with hard won supports like respite, sibling and young carer support, shared care and the support of Andy’s wonderful carer Nuala.
I spend a lot of time helping other carers to find out about and access these types of supports. They are essential to the survival of many families in similar circumstances. They are not perks or privileges but rather the crucial support that allows carers to do what they do best while saving the public purse millions of pounds each year.
Many thanks to Sense Scotland respite and sibling support services, Crossroad’s Young Carer support, Shared carers , our Nuala and family for helping us manage.
In my frequent discussions regarding all things autism I hear lots and lots of vague, unhelpful and ambiguous language that does nothing to forward either awareness or the rights of those living with autism. My dislike of ” care speak” has been well documented in my blogs. This type of language is not just disrespectful in its meaninglessness and ambiguity, it could also be considered to be quite calculated to fit in with a duplicitous agenda that is about being seen to make improvements as budgets are cut. Anyone who has been around disability and social care for any length of time will have numerous examples sadly.
Now and then I hear very accurate language from switched on individuals. You see good communication is straightforward and very simple. There is no need to use the cosy sound bites and concepts, complicated acronyms and jargon loved by councils and health boards or HSCP’s as they are known by those who like this sort of thing. This leads me on to one of the turns of phrase I liked from a man with high functioning autism who was addressing a gathering heavy on professionals. He referred to his audience and many around him as the “autism industry.” I think this needs no further comment because it’s clear and plain. Blunt even? The other phrase that has kept coming into my head in my autism work this week was the concept of whether someone is a believer or a non believer when it comes to ASD. Let’s just say my work here is not yet done. Sadly people ( even those in the industry )often have to see something to believe it.
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.
I was talking with a fellow carer this week. The young person she cares for has a serious illness and very complex needs and I admire her and her family greatly. Sadly our conversation inevitably drifted towards the lack of suitable support for Carers and services for those whom we care for. We agreed on the fact that much of the problem stems from the undervaluing of the Carer’s role. If somehow it could be given a higher profile in our society the understanding would surely be raised generally and momentum might build towards better supports? The worrying trend for not offering statutory assessments and services by many local authorities does the exact opposite sadly. Raising the contribution of Carers could and should be done at different levels. I have found that involving people in any aspect of the care giver’s role or even just spending some time around a family of Carers is very helpful way to increase understanding.( It also speaks volumes about the individuals in our recent experience who have sought to avoid this type of engagement.) Policy makers, council officials and senior managers perhaps prefer concepts like “best value,” “restructuring” and fancy new “initiatives”. This can be carried out safely from their Ivory Towers backed by “consultations” that could tell you that black is white. For those of us who would prefer to deal in hard facts rather than spurious interpretations I welcomed a finding reported ( though not widely) in the media this week. A study carried out by the University’s of Leeds and Sheffield in conjunction with CIRCLE ( Centre for International research on Care, Labour and Equalities) has estimated that unpaid Carers in Scotland are worth as much as £10.8 billion per year. (There was actually a fair amount of research that corroborates this type of figure when I did a little digging.) That is a serious amount of money by any means and should easily justify a sound case for proper assessments and provision of support.
It has helped me counter some of the feelings of guilt engendered by the attitude of some involved in our recent quest for fit for purpose facilities.
3am Andy up for the toilet. Takes a good 1/2 hour to resettle.
6am Andy up and awake. Gave him juice and put on his T.V. and gave him IPad in an attempt to keep him in room without disturbing others.
6 – 8 am periodically check on Andy but return to bed to dose in between.
8am Andy up and into bath. Jen gets up as it is my “lie-in”
8.30am till 9.30 am lay in bed resting attempting to ignore Andy’s outbursts and Helen playing.
10 am got up and hung out washing
10.15 am put on next washing, put away washing
Andy has a poo in garden, assist Jen supporting him
11am sat down to write email regarding house adaptations and uncertainties arising
11.15 am Andy presents me with clothes – his sign for going out. Take Andy and Dave out in car. We go for a milkshake. Between the car and cafe Andy touches several tourists who are sitting on bench. He kisses an elderly man on back of head! I apologise and explain. Happily they are all fine.
Get milkshake at cafe.
12 pm return to car and go for a run around town. Andy does not want to get out at park.
12.20 pm return home. Continue with email.
12.45 pm hang out next washing. Have cup of tea.
1pm Jen takes Andy out to supermarket, I attempt to wash up dishes.
1.20 pm Jen returns back with an upset Andy who refused to get out car at supermarket. I sit with him and try to console him. He indicates he wants to go out.
1.45pm out for a walk with Andy and David ( Jen returned to supermarket)
Walked around town with Andy. Concentrating on keeping up with him and keeping him safe from traffic.
2pm unable to direct Andy past cash line to get money. We make our way to the cafe again and I ask girl who works there to give us milkshake and we will pay later. This was ok.
2.15pm left cafe, Andy wanted to walk along front. He poured most of milkshake into the Clyde.
2.30pm back in town walking. Managed to direct Andy towards home.
2.45pm Arrived home, tired. Completed and sent email while Andy in bath.
3.15pm kept eye on kids in back garden while having a look at material for university .
4.30pm Andy requests to go out. Take him out for a drive in car, Jen makes tea.
5.15pm Quick meal while Jen covers Andy .
5.30pm Jen has quick meal while I watch Andy.
6pm Andy wandering about, grazing on finger foods and in and out of bath. He is getting tired and a bit upset.
6.30pm iron school clothes for David an Helen.
7pm begin bath time routine.
As usual this week has put me under quite a lot of pressure. (loads actually) Andy has had a good week although his care still requires an almighty effort to balance it with all the other demands. My oldest son who has Tourette’s Syndrome has been experiencing an increase in verbal tics. As the new school term looms I have been redoubling my efforts to clarify what supports will be provided in order to offer him reassurance. Frustratingly, though predictably, the hierarchy at our local authority don’t appear to have much knowledge of this often misunderstood condition. My “attitude ” it appears is much more worthy of discussion than their service failures. It’s never easy challenging a large and insular organisation especially when the issue is the wellbeing of a loved one.
My second big stressor this week was about my own job. My employer has saw fit to downgrade my job and this will result in an 11% pay cut. This has caused us a lot of anxiety for the last couple of months wondering if we can get by on the reduced salary. Last week out of the blue I was given the opportunity to stay on my current salary but fill a position that would have threatened my work life balance and required more of me. I listened to those around me and discussed the issues at length. Yesterday a trip to climb the Cobbler with my oldest son convinced me that my duty of responsibility to my family would be best served by making sure I was there for them as much as possible. Given the choice this is more important than money at this time.
Unfortunately being a parent/ carer for a disabled person does not make you exempt from other types of life stress.
I attended a workshop this week on the topic of emergency planning for the care of my precious boy. This was part of a Scottish Government initiative being piloted by Enable Scotland and will hopefully be part of the forthcoming Carer’s Bill.
Although we were focussing on emergency situations, a broader dimension of future planning is also being considered. The workshop was very thought provoking and as an autism parent I welcome the whole idea, although for us and many like us the future can be a disturbing prospect. Contingency planning has become part of our lives on a day to day basis and I would say helps considerably but A.S.D. still has the capacity to throw up unforeseen challenges. Things are seldom dull!
The trainer mentioned a pivotal moment for her when an elderly carer had remarked that she often felt it would be better if her loved one died the day before her. Sadly that sentiment resonates with many carer’s. It raises the question I have contemplated often – who would care for Andy like we would? This whole issue is compounded by the difficult times we live in and the ideologies imposed on us by governments and media. My son’s future in the hands of the current Westminster administration fills me with dread frankly. When I have the energy and will to face our future I often prefer to see it through the fantasy of becoming wealthy. The other thoughts are often about the horror of my precious boy ending up drugged in some medical unit. The latter gives me all the encouragement I need to keep fighting for his rights and wellbeing.
So yes indeed I am very much in favour of having planning discussions now while I am fit and able. Frankly I hope vital services like social work and education will engage in this type of process but the signs have not been encouraging thus far in our journey.
A statutory obligation will be needed I fear to even bring some to the table. There are none so blind as those who will not see – for whatever reason!
The complex care needs of so many vulnerable groups is so often underplayed. The value and worth of the carer’s contribution to society is often both taken for granted and undervalued. And yes a plan is only that but at least it allows the will of carer’s and family to be recorded and a process where some of our fears might be addressed. For me personally it would help enormously.
After a busy weekend Jen and I were looking forward to the start of the week.
Andy was going out with his carer to swim and our other two were back at school. The possibility of “me time” dissipated before our eyes however as we turned ourselves to paper work relating to various aspects of Andy’s care. This is another major role demanded of carers and it can be difficult on various levels. While Jen worked on checking schedules and details for adaptations to our home to ensure this project progresses I tackled the Blue Badge Renewal and the Direct Payments Audit.
The form for the Blue Badge stretched to the best part of 30 pages and what should have been a simple renewal started to get complicated. With Andy’s lifelong disability it should be recognised that the need for this resource is ongoing but because the form takes no account of cognitive disability and the difficulties and dangers arising I had to wade through a largely irrelevant assessment form. The only contact details on the renewal letter was for the council call centre where calls are filtered by people without any knowledge of the process. I had to visit our local council offices for the form because autism is not recognised as a condition that the Blue Badge can be automatically renewed online for. I persevered and completed the form as best I could and take it back to the office. The woman there was sympathetic but bound by rules that are aimed at “tightening up” the process. How recent is the photograph? How do we know Andy stays at that address? I ended up feeling the need to explain a bit about autism to the now busy waiting room. The morning ticked on. It costs £20 to apply for a Blue Badge – admin costs apparently. I made a third trip to the office with a letter to prove that Andy stays with us. We need the Badge to give us better odds on successfully keeping our precious boy safe from road traffic – a deadly threat that he has no inclination of. I submitted the form that cannot be looked at before Thursday because of another rule stating that the application cannot be made earlier than 8 weeks before the expiry of the old one. A reassessment might take 8 weeks the guidance notes inform me. Not much room for slip ups. I hope nobody is off sick or on holiday. It’s taken most of my morning to get this far.
Over lunchtime I began to tackle the Direct Payment Audit. This involves accounting for every penny that is provided to assist with Andy’s care. We are allocated 14 hours per week and this facilitates a break for a few hours a few days a week to let us catch up with the ever present laundry, housework, garden, shopping and well application forms and audits too I guess. There is no suitable school provision for Andy in our town and so these few hours are our only down time from the care role during the week and we could use them many times over. I have a new bike to put together for my other son and a trampoline to assemble for the garden that all our kids want to use. Hopefully I will get to these tasks before the summer’s past but my fishing tackle will spend yet another year in the loft.
This week is Carer’s week apparently. These are some of my thoughts and experiences as a carer.
I was a carer from quite a young age. I wanted to make a difference and do something worthwhile with my life. I liked helping people and avoiding conflict. Caring for adults with learning disabilities and children in local authority care initially ticked these boxes for me. I got in return an enrichment that made me happier and able to feel better about myself. (I have always had low self esteem.) I finished my degree and had the choice of post graduate study in primary teaching or social work. I was more drawn to social work and chose this route in life. I had placements in residential child care ( list D school) and residential adult care ( epilepsy and respite services) and subsequently social worked in a variety of settings mainly outside of conventional fieldwork. Various support services for adults with learning disabilities, residential child care and then an opportunity to contribute to training other social care workers. None of these roles have ever been well paid in terms of national averages but have always brought at least some degree of fulfilment.
Along the way their have been improvements in care practice and more progressive approaches to sensitive issues like rights and personal choice. Despite this however I feel that the ethos and value base of policy makers and those who do their bidding has become pervaded by a disingenuousness that has slowly changed the care world and not in a good way! Too often in recent years laudable ideas – integration, choice, freedom – have been applied in a manner that has been less about improving life for those with disabilities and more about saving money for cash strapped authorities and health boards. Generally for these worthwhile goals to be achieved resources need to be put in not taken out.
The economic downturn has also contributed and made people more hard faced and mean and this has affected all walks of life and services alas even the ones that were meant to look out for the vulnerable in our society.
Before our lives were directly affected by disability with the birth of our autistic son Jen and I were both becoming disillusioned with many aspects of social work and looking for ways to stay true to the principles that took us to it in the first place. Our options were severely curtailed when we became full time carers ourselves.
Both in an employment sense and as part of a family who rely on care services I see less and less emphasis being placed on the basic values that make people want to be carers and more and more emphasis on efficiencies and so called best practice. We need an urgent return to caring values from the top down.
Sadly this appears in some cases to go hand in hand with egotistic professionals who are often dripping in their own self importance – a trait that makes them unwilling to answer to the very people they are supposed to serve. Social workers and education professionals at all levels require to listen, engage and be honest with people with disabilities and their carers. That would be my wish for carer’s week.