WHAT IS WRONG & WHAT CAN BE DONE?
Every human being has needs and everyone requires care and support in one way or another, but some people face barriers to the right care and support, to live the best life possible for them.
According to a piece of legislation called the Care Act (2014) our councils should provide care and support services for all adults who face those barriers, including those with learning difficulties, physical & sensory impairments, illnesses, mental health conditions or frailty. They should also provide support to family carers.
These services, called 'social care' should be delivered with our wellbeing at their heart, enabling us to live as independently as possible and with dignity. According to the Care Act (2014) we should be able to say what we believe our 'wellbeing' needs are, to make our lives as good as they can be, and our councils should tell us what they can provide for us based on those needs. If they don’t have what we require, they should do all in their power to get it for us.
What is actually happening?
However, this simply isn't happening. Rather than first and foremost asking us for our view of our wellbeing needs, instead councils carry out what are called 'eligibility' needs assessments, which only ask us what we would 'like' as an afterthought. What we would ‘like’ is neither here nor there when it comes to what the Act says councils should do.
There is no transparency about how councils decide what makes a need 'eligible', leaving us feeling fearful of whether we will receive what we need and disempowered to challenge them if we don't.
This is a direct breach of the Care Act 2014 which states that local authorities must have regard to 'the importance of beginning with the assumption that the individual is best placed to judge the individual's wellbeing.' (1:3)
Why are councils able to do this?
It sounds unbelievable, but Government actually encourages councils to breach the Care Act so they can work in this way.
Taking away from us the decisions about what our needs are, and making those decisions behind closed doors, is the way in which councils can continue to get away with what they have always gotten away with.
They use their position of great power to make sure that what we ‘need’ always fits into the resources they have available. This makes it look as though all needs can be met within their budgets. It doesn’t matter how large or small the budget is in relation to actual needs in the community.
This allows councils and government to keep their blinkers on. They never have to think about whether their budgets are sufficient.
You can look at the extensive evidence of this in our report 'Unveiling the truth about Adult Social Care in England'.
What can be done about it and by whom?
This is where the Campaign for Real Care comes in.
We are a group of disabled people, mental health survivors, family carers and social work professionals, who have come together to lift the veil on this scandal and campaign for change!
We have created a Charter for the Right to Wellbeing, which we want local authorities and Government to adopt. This charter is rooted in the Care Act 2014 nine areas of wellbeing, which deliver Independent Living as defined by the United Nations. It centres people in need of care and support and informal carers and is founded on the principle that need precedes resource. It is also rooted in the belief that many people are currently shut out of the system because they are not 'eligible', this charter would stop that from happening.
Our priority is amplifying the voices of those who may not be the loudest or most confident. If you would like to add your voice or represent the voice of a loved one as part of our campaign, please fill out our sign up form to subscribe to our mailing list. We aim to hold meetings, webinars and campaigning events over the coming year and would love to involve as many people as possible. Click here to bring up the form.
How does this connect with calls for a national service like the NHS?
Our ultimate goal is to contribute towards the movement for a national service (akin to the NHS) to promote Independent Living, led by those who will use it in collaboration with professionals.
We believe that an absolutely key element to building a service on a national scale is understanding the full extent of what people's needs for wellbeing are AND exactly how much resource is needed to meet them. Our Charter for the Right to Wellbeing, would be the key to doing this.
At the moment there is no record of ALL needs affecting people's wellbeing as set out by the Care Act 2014 anywhere in the country. These wellbeing needs MUST be identified by service users and NOT by politicians setting budgets. Without knowing the level of unmet need we have no foundation upon which to create a national service for Independent Living.
It is therefore absolutely essential that those needs are identified, put on record and used to set any future budgets. Without this piece of the puzzle any budget is pure guess work and undoubtedly vastly inaccurate.
What can be done in the meantime to assert our Care Act rights?
As well as our political campaign, we knew it was vital to try and enable as many people as possible currently in need of care and support services and family carers, to assert their rights according to the Care Act 2014. This would in turn put pressure on councils to actually take action on the political level!
We created a Self Assessment Toolkit for people to take back control of their assessments and feel more empowered to make sure that whatever the council offers, matches up to what is really needed. We want the same choices as anybody else, not to be forced to consent to care plans that are inappropriate and insufficient.
This toolkit has been designed by people who have experience of the council system and who understand just how stressful and overwhelming it can all be, especially when we are already having to deal with so many obstacles to living with dignity. This toolkit is a work in progress and if you have any feedback to give us about how it is working or not for you, please do let us know via email at firstname.lastname@example.org