If carers do not look after themselves, who will be around to look after them and the relatives that they currently care for, this will be no one.
By calling family members carers, we risk turning love and responsibility into a transaction, without adequately supporting or rewarding those who do it
Project Title – Researching the Experiences of Family Carers of People with Learning Disabilities
As is stated in the Information Sheet below this project is in respect of research for a University of Sheffield PhD student. The project has used co-production as a means of including a small group of Sheffield Family carers to help the student, Rachael Black with her PhD course. The group and Rachael came to a joint agreement to produce 2 surveys, 1 to obtain the views of Family Carers and the other to obtain the views of Service Providers whether they be from Local Authorities, Health, Private, Voluntary and Charities, etc.
The links below are in respect of the views of Service Providers and it would be greatly appreciated if persons within those sectors could progress through the Service Providers survey. The survey is open to anyone within those sectors whether they be from management, building base workers or community base, be it in a paid or non-paid capacity. Although, initially this project was to be based on Sheffield, UK it was jointly decided that it should have a greater range, so that a greater diversity of views could be obtained.
Family unpaid carers care, but not the ruling Government.
within care and support services, we want to know your thoughts to help
Autism may strain family life even before children are diagnosed with the disorder, according to a new study that suggests caregivers and patients alike may benefit from treatment tailored to specific sources of stress in the household.
‘………………by Alex Taylor
I frequently think of my life as a never-ending race, in which I am up against the man I should be for the prize of the life I desire. I hold the sharper mind, but carry a permanent injury, so I mostly remain two steps behind. Occasionally I may draw level, thanks to a combination of bloody-mindedness and support from others, without which I would undoubtedly fall even further behind. Alone, it would be no contest.
Yet the fact that I have cerebral palsy has never truly scared me before now. Sure, there have been many battles of angst-ridden internal frustration, but these have always been personal. At no point previously have these battles, due to my disability, endangered my life choices or sense of identity. I have my parents’ support, both financial and otherwise, to thank for this. It has allowed me to dream big and achieve beyond what others narrowly imagined.
As I look to move out of home permanently, aged 25, with journalism finally beginning to pay its way, the reality of fully relying upon Britain’s 2015 model of social welfare is nauseating. This Government has pledged to cut £12bn from the welfare budget, and leaked Whitehall documents suggest that a portion of these cuts will fall upon disability benefits.
Like many other disabled people, I live in a twilight zone, with a mind and personality at sharp odds with the restrictions of my body. Most people do not know how my disability affects my daily life. I do all I can to hide it. But, bluntly, I need help just to live. I cannot dress or transfer to the toilet without help. I cannot cook. This is just the surface.
Now, at a time when I should be taking risks to make the most of life, thanks to Government cuts, I face the prospect of becoming what Stephen Hawking so perfectly described as a “burden”. This is something every person needing assistance dreads, whether they are elderly, disabled, depressed or in the grip of addiction. I presently rely on year-long live-in care placements from Volunteering Matters, a charity providing volunteering opportunities for foreign and domestic students who average between 18 and 22 years-old.
This arrangement suited me perfectly during days of drunken student hedonism and essay-filled all-nighters but, eight years on, I crave long-term stability. I would like to have someone within my age range who understands where I am in life to help empower me. But instead, I will either need to rely on a series of agency carers, costing hundreds of pounds, or council care.
The concept of the professional council care worker is now a myth. Many councils, including my own, outsource care responsibilities to private companies who draw from a limited pool of employees with no standardised training. This leads to a make-do rather than best practice attitude, with hours squeezed due to financial constraints.
To give you an example: as a young man, I asked the council for a male carer to provide two hours’ additional assistance in the morning to allow my mother some respite. You see, our live-in volunteer is only allowed to work 35 hours a week. Crucially, this includes hours “on call” as much as hands-on work, and falls far short of the actual hours in a week. This leaves mum and dad, aged 63 and 68 respectively, to fill in the gaps. Both have been denied carers’ allowance because they are in receipt of the old age pension. Admittedly, we do not live close to the breadline, as they were both successful in their lines of work, but they are literally being made to pay for having a disabled son.
After waiting for four months, during which no male carers were found, I reluctantly agreed to a female carer in a bid to speed up the process and save the strain of my mother’s (understandable) tiredness and the strain on the family. A lady was found within days. I began to prepare myself, to think of the bigger picture. And then, fortuitously yet ominously, the lady failed to turn up. Eventually a man was found.
I had plenty of female “carer” relationships throughout my childhood, including every classroom assistant, every nanny. It is a different story now – let alone the fact that a female carer would cause difficulties with future girlfriends, for instance. Imagine how silently awkward it would be, how delicately confusing and painful for all involved. I am a full-grown man and deserve to be treated as such.
I am not alone in this desire. There is no more vivid depiction of the strain disabled people are facing than when, earlier this month, 30 disabled protesters, some in wheelchairs, tried to storm Prime Minister’s Questions. They were fighting to save the Independent Living Fund (ILF), a longstanding £320m initiative central to helping disabled people manage care costs and live independently, which was recently signalled for closure and finally terminated last week. Its loss will affect 18,000 disabled people, the most disabled being the most affected.
The Department for Work and Pensions (DWP) continues to frame the closure of the ILF not as a cut, but rather a “transition” of responsibility to local authorities under the new Care Act. A spokesman for the Government told me that “more than £260m will be made available to former ILF users” in the forthcoming year, with local authorities and devolved administrations “fully funded to ensure disabled people get the targeted support they need to live independent lives”.
7 million people are unpaid carers in the UK but as the schools break up for the summer and families go on holiday, two thirds of those carers say they don’t expect to go on holiday this year.
According to the latest statistics, 3 in 5 of us will be carers at some point in our lives.
- 68% said they wouldn’t go on holiday this year.
- 50% haven’t had a holiday for between 1 and 5 years.
- 25% haven’t had a holiday for over 5 years.
Carers say when they do get a break, 60% have to complete some house chores, but 1 in 5 decide to catch up on some sleep. ……….’