|Assessing the Government’s Disability Strategy
Disability Rights UK has been undertaking deep analysis of the National Disability Strategy, released after Parliament had broken up for Recess.
Fazilet Hadi, Head of Policy, has written a blog, assessing the different areas addressed, and some glaring, concerning omissions. She says:
“What hits you about the Strategy is what it doesn’t include: it doesn’t address the shockingly low level of benefits that millions of Disabled people are forced to live on; it doesn’t strengthen equality legislation or make enforcement easier; it doesn’t state that all new build homes will be accessible; it doesn’t set an end date for train stations being accessible; it doesn’t tackle the inadequacy of social care or reduce charging; it doesn’t improve the education received by Disabled learners; and it proposes no bold measures to tackle the disability employment gap.”
Read her blog in full here.
‘Waking watch’ charges hit Disabled residents
Shocking numbers of leaseholders are having to invest in ‘waking watch’ schemes in place to protect Disabled residents who cannot self-evacuate in the event of fire.
A waking watch is when a person patrols all floors of a building to give warning in case of fire. Since the Grenfell Tower fire, waking watches are regularly used in buildings that are high risk, with costs paid by leaseholders.
In some buildings this is as much as £11,000 a month, so many blocks are lobbying for them to be withdrawn but are finding they cannot get permission if there is a resident in the building who is considered to be at risk.
Claddag, the Disabled leaseholders group said: “As leaseholders ourselves, we share the enormous financial and emotional pressure placed on us by the building safety crisis. The cost of requirements like waking watch is financially damaging for us all, disabled or otherwise.
“1 in 5 of us are disabled so it is highly likely that at least one disabled person lives in every block of flats around the country. Does this mean that waking watch is needed in every general needs housing development in the UK? Clearly not. So this haphazard and misguided advice needs to stop.
“One of our ‘key asks’ is for the Government to ensure that any costs associated with a disabled person’s safety are taken out of the hands of leaseholders and should be centrally funded. We fear resentment and hostility towards individuals, blamed for additional costs in the service charge.”
Claddag and Disability Rights UK, have been campaigning for Disabled people who live in flats to have personal emergency evacuation plans (PEEPs). However, we do not believe that imposing waking watch is the correct approach.
This week, Claddag has published advice with expert input to help leaseholders to challenge refusals to remove or reduce waking watch due to the presence of a person who cannot self-evacuate.
Twitter’s new design criticised for being less accessible
Twitter has come under fire for launching a new design, with a bespoke font and high colour contrast after the changes caused users to suffer headaches.
The changes were designed to clean up “visual clutter”. But many people with accessibility needs, especially those with processing and visual impairments, deluged the company with comments to say they found it confusing, hard to read and too bright.
Twitter responded to say: “We’re making contrast changes on all buttons to make them easier on the eyes because you told us the new look is uncomfortable for people with sensory sensitivities.”
“We’ve identified issues with the Chirp font for Windows users and are actively working on a fix.”
Twitter’s Head of Branding, Derrit DeRouen said back in January that a new font, designed, by Swiss type foundry Grilli, was being introduced “to improve how we convey emotion and imperfection” – and the widely used standard typeface Helvetica was “not up for the job”.
DR UK’s Media and Communications Manager Anna Morell said: “Social media and communications companies need to remember that accessibility and substance must always come before style.”
NICE withdraws landmark ME/CFS guidance
The National Institute for Health and Care Excellence (NICE) has withdrawn long-awaited landmark guidance on ME at the last minute after it came under pressure from medical groups.
Myalgic Encephalomyelitis (ME) also known as Chronic Fatigue Syndrome (CFS) is a hidden disability thought to affect over a quarter of a million people in the UK. The condition results in pain, brain fog, sensory overwhelm, and a persistent loss of energy, frequently resulting in patients needing to take to bed to rest for long periods. It is poorly understood, with no recognised cure, and with very little offered to patients in the way of treatment.
The guidance had been welcomed by patient groups and charities representing people with the condition, as it set out that the condition is a medical illness, and not a psychological problem, as some people believe. The guidance also withdrew support for Graded Exercise Therapy (GET) – one of the few interventions offered as a form of treatment. GET is in essence incrementally increased exercise, which many patients feel makes their impairments and energy levels worse, not better; and withdrew support for Cognitive Behavioural Therapy (CBT), the psychological talking therapy which has also been offered as a treatment.
Some doctors and medical groups have argued that these two treatments are the only evidence-based ones for the condition, but patients and support groups fiercely criticise their use, citing lived experience, and opposing evidence that says that there is a poor quality clinical evidence base underlying results for GET for ME.
NICE said: “It has become apparent that a number of professional groups are unwilling to support the guidelines.”
A spokesperson for the Royal College of Paediatrics and Child Health said it was “very pleased” about the pause. They said: “we look forward to working with NICE to ensure that future guidance is of benefit to children, young people and those who manage their care”.
Dr Alastair Miller, a consultant physician in infectious disease and internal medicine and a former principal medical adviser for Action for ME, said: “Importantly, without CBT and GET, there is nothing. No new therapies or approaches have emerged since 2007, so in practice one needs to question whether there was ever a requirement to have a new guideline… It is difficult to say where we go from here. There are some amongst the charities and patient groups that are utterly opposed to CBT and GET, and so compromise and consensus may be difficult to achieve.”
DR UK’s Media and Communications Manager Anna Morell said: “This is a significant, and much overlooked condition. As with other hidden disabilities, people with ME struggle to be heard and effectively diagnosed, and are too often disbelieved. The publication of this guidance has been delayed before due to the huge amount of comments received in response to the consultation. Dr Miller is right – there is nothing beyond CBT and GET. But to rely on them as curative, when the groundswell of evidence from patients points to the contrary, is as effective as the old medieval catch-all of prescribing a course of leeches.
“As long as there is a reluctance to fund and undertake proper, robust research into this debilitating condition, there will be no hope of finding effective treatments. The establishment also needs to listen to those who endure the symptoms of this condition day in, day out. They know what works for them and what doesn’t.
“The further delaying of this guidance is a suckerpunch to people who are already, quite literally, flat on our backs.”
A new date for the release of the guidance has yet to be set.
Wembley commits to independent review of Euros after disabled fan attacks
Wembley Stadium has committed to holding an independent review led by Baroness Casey of Blackstock into the violence at this summer’s UEFA European Football Championship which saw Disabled people physically attacked after accessible entrances to the Stadium were stormed by ticketless fans.
Calling the scenes “shocking and appalling” and those who contributed to them “yobs”, a Wembley spokesperson told DR UK that the Stadium management “will be looking to take specific action on the disability access entrances and are currently exploring the options for a structural change to these entrances at all of our general admission turnstiles.”
They went on: “We will of course consult with our disabled fans before making any structural changes.”
Government clarifies advice on child Covid vaccines
In response to queries from parents of Disabled children who have not yet been contacted about vaccines, the Government has reiterated advice from the Joint Committee on Vaccination and Immunisation.
JCVI advice on vaccinations for children (12-15):
- The Government has accepted and is following JCVI advice published on 19 July. The JCVI advice is that children and young people aged 12 years and over with specific underlying health conditions that put them at risk of serious outcomes COVID-19 should be offered COVID-19 vaccination.
- The JCVI advice sets out that at the current time, children aged 12 to 15 years of age with severe neuro-disabilities, Down’s Syndrome, underlying conditions resulting in immunosuppression and those with profound and multiple learning disabilities (PMLD), severe learning disabilities or who are on the learning disability register are considered by the JCVI to be at increased risk for serious outcomes from COVID-19.
- JCVI has advised that children and young people aged 12 years and over who are household contacts of persons (adults or children) who are immunosuppressed should also be offered COVID-19 vaccination.
- All eligible 12-15 year olds should have been offered a first dose before they return to school in September. Vaccinations are expected to start from w/c 23 August, with as many invitations as possible sent out in advance of this.
- The NHS will identify the eligible children and they (or their parents/carers) will be contacted directly. If a family believes their child fits the criteria and there has been no contact by end of August then the family/carer should contact their GP to check eligibility.
- NHS England has sent out guidance to the health and social care system on how to roll out this new advice. The guidance is available here: C1355 next steps following updated JCVI guidance in relation to COVID-19 vaccinations for children and young people (england.nhs.uk)
We the 15 launches at Paralympics
We the 15 is a global campaign aiming to start a global movement to transform the lives of the 1.2 billion people globally who have a disability – 15% of the population.
#WeThe15 has the support of 20 leading global organisations such as the International Paralympic Committee, World Health Organization (WHO), the United Nations, Invictus Games and Special Olympics. They have joined forces for the first time to call for change. Launching at the Tokyo 2020 Paralympic Games, WeThe15 is a campaign focussed on empowering and advancing the lives of people with disabilities. DR UK supports the campaign, which has much in common with our We Belong campaign aims.
Watch the launch video here.