Independent Living – Welcome to this week’s Independent Living news.

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Welcome to this week’s Independent Living news.
22.08.18 Contents:
Reclaiming chronic illness
New funding for supported homes
Purple Tuesday
Communicating with locked-in syndrome
Waiting for a wheelchair
Latest updates – Kingkraft; Superhero Series
1. Reclaiming chronic illness

The disability rights movement has been pretty successful in raising the profile of disabled people. We have laws that are supposed to underpin equality – not always effective – and no shortage of outstanding individuals who achieve great things in sport and other arenas, despite their impairments.

But one group of people has been conspicuously marginalised. Those with long term health conditions where fatigue and energy limitation, as well as pain, are major symptoms, and yet are often not considered to be a real disability.

The Chronic Illness Inclusion Project is looking to change things.

Read more here

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2. New funding for supported homes

Extra money has been found to build thousands of new homes in London and elsewhere in England, which are designed to meet the needs of people with disabilities, mental health issues and older people who need extra support.

£76 million a year is being added to the Care and Support Specialised Housing Fund (CASSH) for the next three years.

More details here

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3. Purple Tuesday

The UK’s first accessible shopping day is coming along on November 13th.

Purple Tuesday is an initiative of the disability organisation, Purple, and is backed by a number of large retailers, including Asda, Sainsbury’s, Argos and Marks & Spencer.

The idea isn’t to have a single accessible day in the year, but rather to encourage businesses to think about how they can improve the welcome they provide for disabled customers, whether in-store or online.

More details here

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4. Communicating with locked-in syndrome

People with locked-in syndrome are unimpaired cognitively, but unable to control any voluntary muscles except those of their eyes. Communication is therefore only possible by using eye movements and blinking.

For the first time, a new wearable device, EyeControl, uses the power of artificial intelligence and tracks eye movements to enable communication at any time and anywhere.

A crowdfunding campaign has been launched to provide as many MND patients in the UK as possible with a device, at no cost to them.

More details here

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5. Waiting for a wheelchair

More than 5000 disabled children are waiting longer than they should for a wheelchair.

The target for NHS England is 18 weeks, and this is achieved for 82% of referrals. As is often the case, the headline figure conceals wide variations.

There are 20 CCGs where less than half of the children get their wheelchair within the target time, and 12 where they achieve it for 100% of applicants.

More details here

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6. Latest updates – Kingkraft; Superhero Series

Long-standing Independent Living site subscriber, Kingkraft, has a great new showcase page, highlighting some of their carefully designed range of assistive bathroom solutions.

From high dependency bathtubs and changing tables to toilet risers, shower chairs, ceiling hoists and adjustable washbasins, no aspect of personal hygiene is left uncovered.

See their new page here

Superhero Series completed2,500 Everyday Superheroes completed the Superhero Tri at Dorney Lake in Windsor last Saturday, alongside some of the nation’s favourite sporting stars, TV personalities and military heroes including Jonnie Peacock, Billy Monger and David Wiseman.

The event invites people with any kind of disability to go solo or unite with family and friends to take on unique challenges with as much or as little time and support as they need.

See more here

Don’t forget that you can apply to join the Independent Living Facebook group, if you would like to spend more time discussing these themes with other interested people.

There are various ways you can get in touch with us: email me; visit our Facebook page and leave a message there; or if it’s short and sweet, Tweet!

Previous newsletters are archived here.

If you are reading a copy of the Independent Living newsletter that has been passed on to you by a colleague or friend, why not sign up for your own free subscription – it’s quick and easy, and won’t lead to your inbox being bombarded with other stuff!

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Until next time, all good wishes,


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Frances Leckie

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