The Care Bill presents a once-in-a-lifetime opportunity for disabled rights

The Care Bill returns to the House of Lords this week. The Government has put down some welcome changes. But political leaders have to be visionary, be bold and think beyond the next election. So do councils – and so, too, do organisations like Scope.

Here’s why social care is so important. Disabled people want to live independently. Sometimes they need support to do so. That could be a personal assistant to help them get up, get washed and dressed. In 2013, I think most people would agree that this support should be in place. But independent living also means disabled people having a say in where they live, who they live with and how they go about their day. This means not being forced to get up the same time every day, eat at the same time every day and go to bed at the same time every day. Again, in 2013, I think most people would back that aspiration. Unfortunately, this doesn’t reflect the reality of many disabled people’s lives.

Take Martyn Sibley, a young disabled internet entrepreneur. He runs Disability Horizons and has just trekked from John o' Groats to Lands’ End in his electric wheelchair. He also still has to argue with his social worker about getting support to go to the toilet. This is unacceptable.

During party conferences Nick Clegg talked-up capping care costs; Ed Miliband backed whole person care and Jeremy Hunt championed integration of health and social care. In the summer the Chancellor found £3.8bn in June’s spending review to start to tackle the crisis.

The Care Bill returns to the House of Lords this week. It’s a once-in-a-lifetime opportunity to reform the care system. The Government has put down some welcome changes. But political leaders have to be visionary, be bold and think beyond the next election. So do councils – and so, too, do organisations like Scope.

I’m Chair of the Care and Support Alliance, a coalition of 75 organisations working together to improve the social care system in this country, so I know how important these issues are for older people, their carers as well. At the moment, there are two fundamental problems.

First, the London School of Economics estimates that 69,000 disabled people who need support to live independently don’t get it. Cash-strapped councils have been upping the bar for eligibility, with 83% of councils now setting the threshold at a higher level than they once did. Under the Government’s plans, all councils could set eligibility at the higher level. Experts say this will leave 105,000 disabled people outside of the system altogether. The Care Bill gives political leaders the chance to be take bold steps to reform the system.

The second problem is that even if you’re lucky enough to be in the system, it can be a struggle to get support that genuinely promotes independent living. In one recent survey, 40% of disabled people said that local care doesn’t meet basic needs like getting up, getting washed and dressed and getting out of the house.

Getting social care reform right will provide the groundwork. But councils need to place independent living at the heart of commissioning. Every disabled people should have a say in what support they receive, and how, when and where they receive it. Meanwhile, organisations like ours can’t just shout from the sidelines. We have to work together to show what’s possible. This means looking to the future, piloting and testing new ways of working, and making tough decisions about the services we provide.

As an example from our own organisation, Scope runs care homes. Our staff do a great job, but many were opened in the 70s, aren’t located in the heart of the community, and are simply not set up to offer disabled people enough choice and control in the 21st century. In the last five years, Scope has changed or closed ten of these services; last year, we decided to review all of our residential services for disabled adults because of these concerns. We’re now proposing to change or close more over the next three years. This will always be done in consultation with those most affected: disabled people who use them, their families and our staff, and we’ll always do our best to support all of those involved. But if we want to give disabled people the same say over where they live and how they live as everyone else, change is unavoidable.

I believe we can build a society where disabled people can genuinely live independently, but we have to think big. That starts this week with the Care Bill.

Will the Government put their money where their mouth is? Image: Getty

Richard Hawkes is chief executive of the disability charity Scope.

Drew Angerer/Getty Images
Show Hide image

Donald Trump wants to terminate the Environmental Protection Agency - can he?

"Epa, Epa, Eeeepaaaaa" – Grampa Simpson.

 

There have been countless jokes about US President Donald Trump’s aversion to academic work, with many comparing him to an infant. The Daily Show created a browser extension aptly named “Make Trump Tweets Eight Again” that converts the font of Potus’ tweets to crayon scrawlings. Indeed, it is absurd that – even without the childish font – one particular bill that was introduced within the first month of Trump taking office looked just as puerile. Proposed by Matt Gaetz, a Republican who had been in Congress for barely a month, “H.R. 861” was only one sentence long:

“The Environmental Protection Agency shall terminate on December 31, 2018”.

If this seems like a stunt, that is because Gaetz is unlikely to actually achieve his stated aim. Drafting such a short bill without any co-sponsors – and leaving it to a novice Congressman to present – is hardly the best strategy to ensure a bill will pass. 

Still, Republicans' distrust for environmental protections is well-known - long-running cartoon show The Simpsons even did a send up of the Epa where the agency had its own private army. So what else makes H.R. 861 implausible?

Well, the 10-word-long statement neglects to address the fact that many federal environmental laws assume the existence of or defer to the Epa. In the event that the Epa was abolished, all of these laws – from the 1946 Atomic Energy Act to the 2016 Frank R. Lautenberg Chemical Safety for the 21st Century Act – would need to be amended. Preferably, a way of doing this would be included in the bill itself.

Additionally, for the bill to be accepted in the Senate there would have to be eight Democratic senators who agreed with its premise. This is an awkward demand when not even all Republicans back Trump. The man Trum appointed to the helm of the Epa, Scott Pruitt, is particularly divisive because of his long opposition to the agency. Republican Senator Susan Collins of Maine said that she was hostile to the appointment of a man who was “so manifestly opposed to the mission of the agency” that he had sued the Epa 14 times. Polls from 2016 and 2017 suggests that most Americans would be also be opposed to the agency’s termination.

But if Trump is incapable of entirely eliminating the Epa, he has other ways of rendering it futile. In January, Potus banned the Epa and National Park Services from “providing updates on social media or to reporters”, and this Friday, Trump plans to “switch off” the government’s largest citizen-linked data site – the Epa’s Open Data Web Service. This is vital not just for storing and displaying information on climate change, but also as an accessible way of civilians viewing details of local environmental changes – such as chemical spills. Given the administration’s recent announcement of his intention to repeal existing safeguards, such as those to stabilise the climate and protect the environment, defunding this public data tool is possibly an attempt to decrease awareness of Trump’s forthcoming actions.

There was also a recent update to the webpage of the Epa's Office of Science and Technology, which saw all references to “science-based” work removed, in favour of an emphasis on “national economically and technologically achievable standards”. 

Trump’s reshuffle of the Epa's priorities puts the onus on economic activity at the expense of public health and environmental safety. Pruitt, who is also eager to #MakeAmericaGreatAgain, spoke in an interview of his desire to “exit” the 2015 Paris Climate Agreement. He was led to this conclusion because of his belief that the agreement means “contracting our economy to serve and really satisfy Europe, and China, and India”.

 

Rather than outright closure of the Epa, its influence and funding are being leached away. H.R. 861 might be a subtle version of one of Potus’ Twitter taunts – empty and outrageous – but it is by no means the only way to drastically alter the Epa’s landscape. With Pruitt as Epa Administrator, the organisation may become a caricature of itself – as in The Simpsons Movie. Let us hope that the #resistance movements started by “Rogue” Epa and National Parks social media accounts are able to stave off the vultures until there is “Hope” once more.

 

Anjuli R. K. Shere is a 2016/17 Wellcome Scholar and science intern at the New Statesman

0800 7318496