Mental Capacity Act Amendment Bill – where’s the person in all of this?

There has been a lot of attention on Parliament due to Brexit in the past few months, but little focus has been given to what is a hugely significant piece of legislation that has been making its way through parliamentary processes.

The Mental Capacity Act (Amendment) Bill was first published in July 2018 and has the potential to significantly impact on the lives of disabled people, and organisations who provide care and support. To tell the story of the Bill and the impact it could have it’s probably easier to start at the beginning of the journey.

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Universal Credit: a shift in attitude?

Since 2013, when Universal Credit was introduced, we have been working to understand exactly what this new type of benefit will mean for disabled people. Universal Credit replaces six means-tested benefits which are also often referred to as legacy benefits, We have been campaigning alongside other organisations to ensure that Universal Credit does not negatively affect disabled people, who represent around 36% of those who are likely to be transitioned across.  Some of our concerns are that many disabled people will be financially worse off under Universal Credit, have difficulty navigating and accessing the application process, and the disruptive 5 week wait before Universal Credit is paid.

But over the weekend it was reported that there could be changes to the planned roll-out of Universal Credit across the country. If this weekend’s reports prove to be true, this could mark a significant shift in government’s position and narrative on Universal Credit.

Instead of seeking Parliamentary approval to mass migrate everyone still claiming legacy benefits across to Universal Credit before 2023, it is rumoured that the Secretary of State for Work and Pensions (Amber Rudd) would only seek approval for a test of 10,000 people to be transferred across. After that, it is said that she will review the trial, make any necessary changes, before going on to seek Parliamentary approval to move the remainder of claimants across. However, we are still yet to hear this officially confirmed by her Department.

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‘Loneliness is not somebody else’s problem’

Hands holding

In 2018 we all became worried about loneliness. It is not a new problem. But last year and thanks to the Jo Cox Commission, the Minister for Loneliness, the Campaign to End Loneliness, the disability sector working together, and countless other organisations, it has become an urgent one. We also have

our first Loneliness Strategy. 2019 is the year in which we seek to tackle the loneliness epidemic.

There are 9 million of people in the UK who are lonely. We have an increased understanding that loneliness is bad for individuals and communities. We know that the feeling of being by oneself with no one to rely on, to talk to, or to share life with causes pain.

Why is that? On the one hand, we have a desire for company. We want to be part of a group. We know social life is a benign power. But sometimes it feels we were put on this world to remain separate from one another, rather than come together as a community. Instead we nourish human suffering and loneliness.

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All I want for Christmas is a solution for social care

Another year ends without a long-term sustainable funding solution for social care. Last week, Minister for Care, Caroline Dinenage, quietly confirmed that the Social Care Green Paper will be delayed until January 2019.

I’m deeply disappointed, yet sadly not surprised, that the Social Care Green Paper has not arrived in time for Christmas. It is one of many crucial reforms side lined by the Brexit chaos, along with the NHS Long Term plan.

For over a year the government has repeated it’s tired old mantra, that the green paper is ‘coming soon’. A government that really wants to solve the social care crisis finds a way; those that don’t, find excuses.

Further excuses and delays will mean disabled people don’t receive good quality care or are unable to access the care they need. It leaves more and more disabled people at crisis point and increasingly reliant on NHS services which are already under pressure.

At this point in time, the crumbling social care sector has neither a long-term or short-term funding solution. The Autumn Budget delivered nothing but a £650 million temporary sticking plaster, only a quarter of the money needed to solve the social care crisis. Meanwhile, many disabled people have been left struggling due to the lack of urgency the government has shown this issue.

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Now everyone feels entitled to a priority seat

In an ideal world, everyone could use public transport. As a deafblind person, I really welcome the Government initiative to make this a reality.

Raised kerbs, low steps and staff understanding the needs of passengers is essential. But over the years I’ve noticed an increasing number of people being rude. Accessibility depends as much on people’s attitudes, and they really need to change for a truly accessible transport system to be a reality.

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The voluntary sector can’t tackle loneliness in isolation from one another

 

Two men in conversation outside
CEO Richard Kramer discusses how Sense services can tackle loneliness

Loneliness is a serious public issue deserving of public funds and national attention. It’s well publicised that the issue disproportionately affects older people, with half a million older people in this country going 5 or 6 days a week without speaking to anyone at all.

What is less well known, is its affect on disabled people who may never have the opportunity to establish friendships in the first place. Continue reading “The voluntary sector can’t tackle loneliness in isolation from one another”

I’m fighting for the future of my disabled daughter’s care

A smiling girl in an accessible buggy with a smiling woman and a smiling boy and girl who are wearing cycling helmets

When I first took my disabled daughter to Nascot Lawn Respite Centre – the only NHS overnight and daycare centre in Hertfordshire – I never imagined it would become one of the most important places in our lives. So when the service was threatened by closure last year, I didn’t hesitate to lead the legal challenge to reverse the decision.

Beating the odds and winning two judicial reviews meant the parents from Nascot Lawn raised the importance of short breaks and social care funding for all disabled children to a national level. But now, with only three staff members left, the gem of Hertfordshire is on the brink of extinction and my daughter’s future uncertain.

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Loneliness can be a huge challenge when you’re a disabled young person transitioning to adulthood

A woman with her guide dog stands on the terraces at the house of lords, parliament

My name’s Ellen Watson. I’m 22 years old. I’m a student at the University of Sheffield. I recently attended parliament where I spoke about loneliness and disability. I shared my experience of being deaf and losing my sight, and the effect it has on young disabled people transitioning from childhood to adulthood.

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Who will care for my disabled son when I’m gone?

A woman sits with her son at the kitchen table. They're smiling. She rubs his head.

The decision to explore the provision of long term care for your loved one is not an easy one.

We had always said we’d look after our son Alex for as long as we could, and as long as there were support systems in place. But with dwindling resources in respite care, it’s becoming harder to plan for the future. Continue reading “Who will care for my disabled son when I’m gone?”

Why I’m supporting the When I’m Gone campaign

Jo Platt MP
Jo Platt MP

Many disabled people rely on the support of their families. Family members play a key role in their care and often become experts. However, there is much concern over what happens as those family carers get older. What happens when family carers are no longer able to support their loved ones?

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