Sometimes, campaigning is exhilarating: we are doing fun and exciting things and getting quick results. For example, when I was a student, I was involved in a campaign that arranged for a wheelchair user to abseil down a building in tandem with a senior manager from a sister organisation to highlight its inaccessibility. Just six weeks later, a lift was installed. But, most of the time, campaigning is hard work, slow and a bumpy ride.
When you have been campaigning for something for years, it is easy to lose the will to live, never mind to keep repeating the same points.
It is at times like this that we need to reflect on, and draw strength from, what we have achieved, no matter how small these successes may be.
Deafblind people have a long history of campaigning on social care, and the fight goes on. In fact, the next couple of years are, perhaps the most critical yet. In the next few months, government will set out in regulations and guidance the detail of how social care will work from April next year. Then local authorities have to implement the changes.
The deafblind guidance
In the 1990s, deafblind people wrote letters, went to meetings, marched to Parliament and more calling for legislation to secure deafblind people’s rights to support. A private member’s bill was introduced to Parliament. Whilst this bill failed to become law, it spurred the Department of Health into issuing the statutory deafblind guidance in 2001. Victory!
The deafblind guidance has dramatically increased the number of deafblind people receiving appropriate social care support. Those of us, like me, who were not involved in the campaigning that led to it, but have since benefitted from the guidance, have a lot to be grateful for. Thank you.
Fast forward to 2009, when the government asked the Law Commission to review social care law. At that point, we could have lost everything: But, no, deafblind people met with and wrote to the Law Commission. As a result, the Law Commission recommended that the provisions in the deafblind guidance should stay. Victory!
Then came the nail-biting wait: what would the government do with the Law Commission’s recommendations? Deafblind people used that time to tell MPs and government ministers why the deafblind guidance matters.
The government responds
In 2011, when the government responded to the Law Commission, it accepted their recommendations about deafblindness. Victory!
Services saved despite cuts
That same year, we celebrated the tenth anniversary of the deafblind guidance and highlighted some of the good practice that had come out of it. Doing that helped to save services for deafblind people in some local authorities, even in the face of harsh spending cuts. Victory!
Draft Care and Support Bill published
We had the government’s word on keeping the provisions of the deafblind guidance but no actual legislation. In 2012, they published the draft Care and Support Bill. Once again, deafblind people swung into action, writing to MPs and ministers, lobbying Parliament, meeting with civil servants working on the Bill and highlighting the issue in the media.
Care Bill published
In 2013, when the Care Bill was published and began its journey through Parliament, it included things we had called for: recognition that social care is about more than personal care; a focus on a person’s well being; new rights for carers; and more. Victory!
The Care Bill becomes an Act
As the Bill moved through Parliament, deafblind people kept up the pressure on MPs. It has now become the Care Act and the things that deafblind people have been calling for are all in it. Victory!
The fight goes on
The Care Act gives an overarching framework for the social care system as it will be from April next year and that framework could be very positive for deafblind people and their families. But, as is so often the case, the devil will be in the detail of the regulations and guidance and in how local authorities implement it.
By campaigning, deafblind people and their families have achieved so many victories, not just those I have mentioned but many I have skipped over such as the re-issuing of the deafblind guidance in 2009. Even for the late-comers like me, it has been a long and bumpy road.
Over the next couple of years, we must keep up the fight, ensuring that all of those victories to date are built on in the regulations and guidance and then capitalised on when local authorities implement the new system.
This is not about dull policy. It is about improving everyday life for deafblind people.
Now is not the time to wonder whether it is worth making the same arguments for the umpteenth time but to keep making them with renewed power and determination. We will not give up the fight.
What are the social care campaign victories you want to celebrate and build on? Tell us in the comments below.
Liz Ball is Campaigns Involvement Officer at Sense