Coalition maps out new route to independent living in England

A coalition of disabled people and allies who were “fed up” with years of failed attempts to produce change in social care have united around a new “road map” that lays out a path to a right to independent living in England.

The change necessary to achieve the right to independent living – as described in article 19 of the UN disability convention – will be a long-term project, a public meeting heard on Monday.

But key figures in the Roadmap to Independent Living Coalition’s steering group believe their “step-by-step approach to achieving independent living, focusing on practical and realistic steps” could finally “fix” social care for good.

Their aim, they say, is to show “how we can improve social care rather than just pointing out what’s wrong”.

Now they are seeking the volunteers* – and funding – they need to make their Roadmap to Independent Living (PDF) a reality**.

Members of the coalition’s steering group have been working on the road map for 18 months, and they have already had one meeting with senior Department of Health and Social Care officials.

Charli Thompson, a disabled member of the steering group, said her experience of working on the roadmap had been “so, so, so positive” after years of “hitting a brick wall” in her work with another campaign group when trying to secure change from local authorities.

She told the online meeting that a crucial first step for the campaign was to “expose the unmet need” in the social care system.

She said: “Once the system is transparent and once people’s needs are being acknowledged… and the gap between needs and funding is being acknowledged… there will be all of this evidence that we can then put forward to say we need more funding.”

Thompson said the coalition’s “bold vision of a system that responds to people” will not be achievable until they “shift the narrative” to show this gap between needs and funding.

Jade, another member of the steering group, told the meeting that the current system was plagued by wasteful spending.

She pointed to councils spending hundreds of thousands of pounds on staff to administer their care charging systems.

She said: “I’ve just had a long battle with my council over disability-related expenses (DRE).

“That argument has gone on over two years, and under that I’ve had multiple complaints, I’ve had meetings with senior managers, I’ve had so many meetings with my social worker.

“My social worker has sent me, I lost count at one point, hundreds of emails asking for evidence.”

And she pointed to the “pain and suffering” caused to those people who are paying “ridiculous amounts of charges” and having to fight their councils.

She said: “I cannot tell you just from a personal point, how many times I’ve been in tears the last two years.

“I’m just one person. Think of everyone out there struggling, thinking, ‘I cannot afford to pay my care charges; what do I pay this month? My heating bill or my care charge?’

“It’s inhumane. It just is and it shouldn’t be that way.”

Rick Burgess, from Greater Manchester Coalition of Disabled People, said the roadmap was “going to take time”.

He said: “You’re attempting to take back power from centralised systems and put it into the hands of the disabled people who want to live their best life under a system that we have co-produced.”

Ultimately, he said, the roadmap is “centred around the vision for independent living for disabled people that has been created by and with disabled people.

“It is going to take a long time to get that explained to government, but it’s also the only way we’re going to get out of this crisis and address the actual issue of the Treasury refusing to spend more money.”

He added: “We are looking to make the full change to independent living by the end of this process.

“And it might take five to 10 years, maybe 15 years, but often in struggles like this you sometimes know you are probably not going to see the full result of your fight; it might be up to people that come after you.

“But if we keep going in this piecemeal way, we will end up just recycling this crisis year in, year out.

“That’s why we want to be really upfront about the struggles ahead and where those battles are that we have to win.”

David Ashley, a specialist in direct payments and a steering group member, said working on the roadmap had been “a breath of fresh air” after a decade of frustration.

He said the meeting with Department of Health and Social Care (DHSC) officials showed there were “similar frustrations bubbling away” within the department over “how do you fix the system with limited resource” and “how do you work towards something better”.

He said DHSC was “very, very interested in our ideas”, with a second meeting due to take place soon.

The meeting also heard that the steering group is looking for users of social care – from a diverse range of backgrounds – to take part in a documentary that will promote the coalition’s work* and will be shared with policy-makers.

*To contact the coalition, visit this temporary website for an email address

**The coalition’s temporary website includes a link to an Easy Read version of its mission statement

Picture by Andrew Parsons/No 10 Downing Street