The fight goes on to victory

Sometimes, campaigning is exhilarating: we are doing fun and exciting things and getting quick results. For example, when I was a student, I was involved in a campaign that arranged for a wheelchair user to abseil down a building in tandem with a senior manager from a sister organisation to highlight its inaccessibility. Just six weeks later, a lift was installed. But, most of the time, campaigning is hard work, slow and a bumpy ride.

When you have been campaigning for something for years, it is easy to lose the will to live, never mind to keep repeating the same points.

It is at times like this that we need to reflect on, and draw strength from, what we have achieved, no matter how small these successes may be.

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Stop blaming blindness

Rehabilitation services enable blind, and deafblind, people to develop skills to increase independence. They include, for example, training in orientation and mobility, cooking and other household tasks, reading braille, and using specialist equipment and software. They reduce, sometimes eliminate, the need for long term support.

A recent report published by RNIB revealed a worrying drop in the number of visually impaired people receiving rehabilitation services. It also showed that, when such services are provided, they are often restricted to six weeks, which is woefully inadequate to learn the complex skills, and the confidence needed.

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The impact of 'bedroom tax' on deafblind people

Kari Gerstheimer, Head of Legal Support ServicesKari Gerstheimer

It has not been an easy year for disabled people. Local authorities are squeezing social care support to the bare bone, living costs are spiraling and many disabled people are worried about the changes in welfare benefit from Disability Living Allowance (DLA) to Personal Independence Payment (PIP).

The ‘bedroom tax’, a term routinely used to describe the governments ‘under occupancy charge’ or ‘spare room subsidy’, is a nationwide change in the way housing benefit entitlement is calculated. If tenants are assessed as having a ‘spare room’ they will see a reduction in their overall housing benefit of 14 per cent, or 25 per cent if the tenant has two ‘spare rooms’.

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The excitement of taking rubbish out to the bin….

One thing I am particularly pleased to see in the Care Bill is that local authorities will have to promote wellbeing in relation to a number of factors, including suitability of living accommodation. Having lived for several years in a flat that was inaccessible, I know what a difference suitable housing can make to wellbeing.

My old flat was almost perfect for me when I first moved there but, within a couple of years of moving in, I became a wheelchair user, making the flat totally unsuitable.

It was on the first floor. To get in or out, I had to drag myself up and down outdoor stairs on my bottom, in full view of several neighbours. Bye bye dignity.

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Victory, at what cost?

Pyrrhus, Sense Activist

Having ranted over the award of Employment Support Allowance (ESA) only being awarded for six months to ‘M’ on the  Sense oldblog, for whom I am a benefits appointee, let me tell you the following tales of welfare reform concerning council tax benefit and housing benefit.

M’s local authority, which had previously not charged council tax, decided that with few exceptions, most people would pay a proportion.  There was an “exemption from” category which M would be eligible for, but required a claim to be made…

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Why should I have to use my DLA to pay for my care and support?

Steve

I am Steve, am 49 and have been totally blind and 80% deaf since 1980.

For the last ten years I’ve been a wheelchair user, having Alstrom syndrome which affects my heart, kidneys, liver and lungs. I also have problems with my back and neck as well as a form of osteoarthritis and nerve pain.

I need a lot of support with communication, having a social life and getting out of my flat.

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A punishment for claiming benefits?

Pyrrhus

I am the appointee for a young Deaf man, who I will refer to as ‘M’, who has autism and additional needs. In January I received his form to complete to claim Employment and Support Allowance (ESA).

Days and hours were spent filling it in, reading advice etc and obtaining supporting evidence to ensure a full picture was given of his needs and why he previously received Incapacity Benefit. Finally the day came when it was complete and I sent it by special delivery .

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Proper educational support for deafblind children

Molly Kearney

When I started at Sense less than a year ago I had very little idea how difficult families find it to get proper educational support for their disabled children. I quickly learned that it is a constant struggle for parents and carers, and for the deafblind children and young people who need this support to get on.

While many stories have been heartbreaking to hear, it’s also been incredibly inspiring to meet families who have fought so hard and won so much for their children.

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Social Care: a cost or a saving?

Katie Vecina

Bureaucracy is the punishment for having the gumption to ask for support. Whether we need support from Access to Work, social security benefits, housing or social care, we must lay ourselves bare, on forests-worth of forms and in face-to-face assessments, revealing to a stranger everything about ourselves in the most intimate detail: our deepest, darkest secrets; our medical history; our finances; our relationships; and so on and so forth. We must justify, many times over, why we need the support we are asking for. It is a physically and mentally painful, exhausting, and demeaning process.

Why do we do it? Are disabled people all masochists, hell-bent on inflicting ever greater humiliation and distress upon ourselves? No. We do it, only, when going without the support is even more dehumanising.

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Much more is needed to address the crisis in social care

Last year, when the Dilnot commission made its recommendations on the funding of care and support, I cautiously welcomed some of those recommendations but expressed concern about what Government would actually do with them. Now that we know more about what the Government intends to do, I’m even more concerned.

The Government will set a cap of £75,000 on the amount any individual will have to pay towards their care and support costs. This cap will be lower for people under retirement age but the announcement on 11 February failed to specify how much lower, except to say it would be £0 for anyone with care and support needs before the age of 18.

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