Tag Archives: living independently

“Disability is full of compromises and workarounds”

Edith was diagnosed with Multiple Sclerosis when she was 16. As her condition started worsening, it was essential that she found a social care package that met her needs.

In this blog, Edith writes about how finding the right social care package has enabled her to focus on the other important things in life.

Writing about my twice daily care visits feels like trying to describe brushing my teeth, or cutting my nails. It’s boring and I aim not to focus any great deal of time on it, it’s just an essential part of daily life.

A young woman smiles whilst sitting on a sofa, typing on a laptop
Edith sitting on a sofa with her laptop

I use a wheelchair full time, but the ‘book ends’ of my day are especially hard. Lying in bed overnight, my whole body stiffens up and takes a while to stretch out and co-operate. Come evening, fatigue has turned me to jelly.

Add in flare ups, temperature variations and colds or viruses. Each day is a surprise. My carer starts by stretching my legs in bed and helping me to a sitting position. Using a standing frame I transfer to my wheelchair, and in a subsequent set of routines I get dressed and ready for my day. The process is fairly cumbersome and long winded, but we go the fastest we can, totalling around an hour.

Night calls follow a similar set of processes, all made quicker and easier if I’m having a ‘good day’, but following a routine which we know well enough to follow without fuss.

It means I can focus on the rest of my life

My social care calls are crucial. Do I want to have company first thing in the morning? Would I love to get up and make a cup of tea then go back to bed for a few hours? What about those unexpected evenings out where one drink turns into many and you just re-adjust your 12 hour plan accordingly.

The alternative is being bed bound, in some residential home, or relying on my parents (while I can, then what?). So when it works, my social care support enables everything else.

With the essentials of personal care covered, I can focus on the rest of my life, the nights out, holidays, work, credit card bills… just life. To me social care is as necessary a part of my functioning as any of my healthcare, if not more so.

I’m frustrated by the wires I’ve had to untangle to get social care in place, the lack of transparency in funding and set up. It feels more vulnerable than the NHS and prescription meds, yet to me should be treated in the same way.

It’s all a part of my life I’d rather not have to incorporate, but fundamental for me to achieve, do, live or anything else.

Read more from Edith on her blog.

Half of disabled people feel excluded from society and many say prejudicial attitudes haven’t improved in decades.

We know there is still work to do until all disabled people enjoy equality and fairness, so we all need to work together to change society for the better. 

There’s something everyone can do to be a Disability Gamechanger so join the campaign today to end this inequality.

What will the Comprehensive Spending Review mean for disabled people?

On Wednesday, the Government announces its spending decisions for the next four years in its Comprehensive Spending Review (CSR). These decisions are likely to have a big impact on the lives of disabled people in this Parliament.

Here are three areas that Scope will be looking for the Chancellor to address.

Support so that more disabled people can find, stay and progress in work

The Government has set out an ambitious – and very welcome – aim of halving the disability employment gap. This was something that Scope had called on all Parties to do in the run up to the 2015 General Election, and both the Prime Minister and Iain Duncan Smith have said this is a priority for the Government.

Right now, the difference in the employment rate amongst disabled people and the rest of the population is 30%, and has remained static for a decade.

We know disabled people want to work, and are ready to do so. But this gap remains for a range of reasons – from a lack of suitable and available jobs, poor attitudes from potential employers and a lack of appropriate support to enter the workplace.

But if this gap is to be halved, the Government needs action which matches this ambition. For example, current back to work programmes have poor outcomes in supporting disabled people into work and these must be improved to ensure specialist, tailored support is available.

As the Chancellor is expected to give more detail about the ‘Devolution Revolution’ it is critical that this opportunity connects disabled people to local jobs and growth if he is also to ‘halve the disability employment gap’.

Tackling the extra costs of disability

Life costs more if you are disabled. Our research shows that disabled people spend an average of £550 on disability related extra costs each month.

Disability Living Allowance (DLA) and its replacement, the Personal Independence Payment (PIP), are in recognition of this. Scope very much welcomed the Chancellor’s commitment in the June 2015 Budget to protect these payments, and we will be looking for him to reaffirm this commitment.

But the Chancellor can also go further in making sure these extra costs are tackled and reduced. Last year, an independent inquiry by the Extra Costs Commission made a number of recommendations about how these extra costs can be driven down through action by Government, businesses, regulators and disabled people themselves. The Chancellor should use this opportunity to adopt some of the Commission’s recommendations to support disabled people as consumers and drive down these extra costs in areas like taxis and insurance. He could also adopt the Commission’s recommendation to get more disabled people online, supporting them to take advantage of online offers, information and advice.

Supporting disabled people to live independently

Social care is the support that disabled people need to get up, get washed, and get out of the house.

The care system is currently chronically underfunded, with £4.6 billion having been removed from the system over the last five years. According to the Local Government Association and the Association of Directors of Adult Social Services, an additional £700 million per year is needed to address the social care funding gap, plus £2 billion over the spending review term.

Recently published Scope research shows the impact of this care crisis. Over half of the disabled people we spoke to who use social care (55%) can’t get the support they need to live independently. It is essential the Chancellor addresses the care crisis in the Spending Review, providing a sustainable settlement for the social care system, so that disabled people are able to receive the support they need to live independently.

The Government has also promised to do more to integrate the health and social care systems. Any announcement the Chancellor makes on how he plans to do this must consider disabled people and how integration will support their independence.

Like much of the country, Scope will be watching the Chancellor’s announcements closely. No other set piece political event over the next four years will provide a better opportunity for the Government to give disabled people an equal stake in our country’s future.

Looking ahead

There can be no doubt that 2013 is already proving to be another tough year for many disabled people. Welfare and social care reforms continue to gain momentum and we’re already seeing an impact on quality of life for many families and individuals. We are particularly concerned that disabled people are being overlooked in the discussions about changes to the social care system and are part of a major campaign across the disability sector to address this. And locally, we know that cuts to care packages and the rollout of the Work Capability Assessment continue to cause anxiety for a huge number of people.

Against this backdrop, I am more aware than ever about the need for Scope to move with the times. The strategic direction we launched last year is all about creating a better society for disabled people and their families. We are now beginning to turn this direction into action. At the start February, we spent a valuable day with our Scope Assembly members discussing the strategic theme of ‘Living independently in the community’. We gathered some very useful ideas. One of the things we know we need to address is how we support people with the most complex needs to gain greater independence, ensuring that they have access to all the support that they (and their families and carers) need to achieve this.

It’s important that we think about all of these things. We have to respond to what is happening now, influencing decision makers and helping to ensure that disabled people’s voices are heard. At the same time, we need to look to the future, being willing to ask the big questions and take bold decisions. We will continue to do both of these things throughout 2013 and will continue to keep you updated.

Thank you, as always, for your support.