In the words of his mum, Joe is like a magnet; he’s fun and people and animals just love being with him. Yet life is a challenge for Joe.
He is a wheelchair user and has several serious health and medical conditions, including severe curvature of the spine, epilepsy and just one lung that only works at a quarter of its capacity. He has a diagnosis of cerebral palsy, which causes difficulty for Joe in using his arms and legs.
It’s just over two weeks now since NHS England published the NHS Long Term Plan. Setting out the vision for the next 10 years of the NHS, the plan was heralded by many as the solution to the challenges facing the NHS. As the dust is now settling following the launch of the plan it’s time to review it in more detail; what does it actually mean for disabled people with complex needs and their families?
I work as a Dance Practitioner at Step Change Studios, which is an inclusive dance company that provides opportunities for people with multiple disabilities to dance. Sense and Step Change Studios have been working together to support people of different ages and abilities to be active and explore their creative, communication and social skills through dance.
I grew up in Bethnal Green and was an only child. My father died suddenly two months before I was born, so when I was born, I only had my Mum and my Nan. My Nan brought me up because Mum had to work. That’s just how it was.
I grew up with hearing problems, during the Blitz in London. I’d be in a shelter, laying there while they put drops in my ears and the bombs were falling. It was a nightmare. So I’ve been hard of hearing my whole life, but it just got worse as I got older.
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.
I first met Faye and Ben, Luca’s mum and dad, in hospital on the day Luca was born – I happened to be there visiting another child. He had just been diagnosed with CHARGE syndrome, a rare genetic condition that affects his ability to see, hear and balance. Faye and Ben were terrified he wouldn’t be able to communicate, or enjoy things that other children do.Luca’s three now and it’s been a hard road for the whole family, he was in hospital for the first eight months of his life. But, thanks to the generosity of our wonderful supporters, we’ve been there every step of the way to help Luca to connect with the world.
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.
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.
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.
My daughter Mia, who is two-years-old, has a rare genetic condition, which causes epilepsy and severe developmental delay. Her condition also affects her motor skills and muscle tone, so she’s unable to feed herself and it’s unlikely she’ll ever be able to walk.
Mia also has a visual processing condition which means although her eyes can see, her brain is unable to process the information. She can distinguish between light and dark, but she can’t see detail, so going into darkness can be distressing for her as she struggles to understand what’s happening.