Posted by Martin Boniface at 26/08/2015 10:21:32
Pictured: Martin and his son Harry on the day they took him to be professionally supported.
Sometimes we need to let go of the ones we love. This can apply in many situations; such as the death of a loved one, a son or daughter leaving home. In my case it was when I took the decision to move my youngest child Harry, then aged seven, to The David Lewis Centre in Cheshire, a residential care home for children and adults with severe epilepsy.
I still have a photograph of him on the day that I drove him to the centre and left him there. Why would I want to leave a photograph on display of what was probably one of the low points of my life?
Even now, some 16 years on, I wonder if I made the right decision. Then sense kicks in and I realise that we are all in a much better place as a result of this decision. The decision was not an easy one, but when I look back at what was taking place and where we are now I know it was right for Harry and the family.
Harry has complex issues, including severe Epilepsy (which we have still not managed to control), severe learning disabilities and is non-verbal. After caring for him at home for the first seven years of his life, my (now ex) wife and I were reduced to being little more than carers living in the same house. Everything revolved around the needs of Harry. We had no time for each other as husband and wife and our other son, who is three years older than Harry, got used to doing activities with only one of us or hearing the standard response of "well it all depends on Harry".
With hindsight, we left it too late before pushing for support from agencies such as Social Services. We gave the appearance of coping and as such were pretty much left to get on with it. Why wouldn't we? We are his parents after all and it is what you do isn't it?
To cut a very long story short, the result of "managing" on our own, was separation and divorce. Not an ideal situation. As parents living in separate houses, Harry and his older brother split their time living with each of us in turn on something of a rota. This arrangement lasted a few months before we were identified by Social Services as a "family in crisis" and we had to look at finding emergency respite care for Harry. That was 16 years ago and, apart form a number of overnight stays, Harry has lived away from home in some form of professional care setting.
Looking back we should have been more forthright in seeking support from other quarters. If we had, well who knows? Life has been something of an emotional roller coaster since then, prefaced by phrases such as: "what if?", "if only", "why didn't we?" and so on. Harry has been supported by Dimensions for the last five years. I see him most weeks and there are still times when I feel a sense of guilt or even failure as a parent that he does not live at home. Then I remind myself that we are all far better off with Harry being cared for by staff who can concentrate on supporting him full time, who are fresh as they are not juggling another role alongside supporting him, and who themselves are supported by a professional organisation like Dimensions. My time with Harry is much more positive as a result.
I don't think you can really ever quite let go of someone you love. But, what you can do is to change how you look at your relationship and focus on the positive aspects of any other arrangement.
I have just decided to sell the family home of 24 years and start afresh with a new house and am starting to de-clutter. Perhaps it is also time to discard the photograph and let go a little bit more? After all, it does not mean that I love Harry any less.
Posted by Steve Scown at 18/08/2015 10:10:30
Earlier this year I took a short break. When I returned to work I had to take in a government commitment to force the closure of ATUs. My summer break coincided with the Budget and so this time I’ve had to get my head round the impact of the National Living Wage (NLW). Now, given the apparent lack of progress in closing any ATUs, I’m not entirely confident the NLW will follow the currently predicted trajectory to £9.00ph. But there is so much more to think about…
Let’s look at things from a very different perspective. If Dimensions made and sold widgets the increased wage costs would be balanced by two things: our ability to raise prices, and the reduction in corporation tax which would reduce our tax bill. But Dimensions lives in a very different world – we don’t make widgets. We help vulnerable people have a life. And as a not for profit we can’t benefit from reductions in corporation tax.
Like other organisations, Dimensions supports any initiative, including the NLW, that increases the pay of our frontline staff. We’ve strived successfully in recent years to juggle a number of priorities: determination to keep our support worker pay above the National Minimum Wage (NMW,) investment to improve the quality of our support, and collaboration with commissioners to improve efficiency, passing £1.2m financial savings back to them last year.
However, all of this is about to change. In the first year or so of the NLW only a small number of support workers in some parts of the country will see their pay increase. However, as we move towards 2020 more and more staff will benefit as the NLW progresses towards the £9.00 hourly rate. The cost of this will be in the millions and this will undoubtedly bring to an end our ability to realise and return savings to our commissioners. In fact to deliver the same outcomes it will be inevitable that we’re going to need higher levels of funding.
“How many local authorities are right now debating just how severe a person’s support needs have to be before they can continue to receive funding?”
The Chancellor recently challenged government departments to think how to save a further 40% from their budgets. We know demand for social care is going to massively increase over the coming years. So where exactly is the money to fund increased wages going to come from? How many local authorities are right now debating just how severe a person’s support needs have to be before they can continue to receive funding? Consequently I doubt local authorities, CCGs and others will respond positively to price increases.
As a provider of support for people with learning disabilities and autism, Dimensions exists because we believe some people need help and support to have the same choice and control over their lives that you and I enjoy. We believe we can make, along with other great organisations, a positive contribution to society by providing high quality services and excellent support. Not every one of the million-plus people living with a learning disability and autism in this country needs a provider, but unfortunately some do.
So, despite strongly supporting the principles behind the NLW I am a long way from believing this has been thought through. Increasingly I see this as just one small sign of the beginning of a seismic change to our sector and our society.
Undoubtedly with this government, and let’s remember they are less than 5% of the way through their term of office, we are heading towards a society where the state will play a smaller role than I have known in my lifetime. If this smaller state won’t fund services funded today - who will?
In the older person’s sector we are increasingly seeing a two tier system – one for those with adequate wealth to self fund and one for those without such means who rely on their local authority. People with a learning disability and autism have not been able to build up personal wealth and can rarely be self-funders. So will our smaller state expect to fund only the most vulnerable people with the most complex of needs? Will a consequence be more and more families having to become full-time carers – or having to fund in full or via top-up payments? Few families would be able to afford such care.
As an optimist I’m sure I’ve missed something and there is a different answer I haven’t yet seen. So I’m spending my time reflecting on a puzzle. How can services with better paid staff provided for more people who have more complex needs be funded when local authorities are going to have cope with massively reduced budgets? It is without doubt one of the hardest circles to square I’ve yet come across.