Our regular newsletter contains news and information about various Disability issues and paper copies are distributed around Spelthorne Borough for those in the Community who do NOT have access to a computer.  Copies can be found at the Borough's Community Centres, Libraries, Sheltered Residential housing.

Copies to Volunteer groups and Special Interest Groups and Societies are also distributed via email.  If you would like a copy of the latest newsletter or if you would like news and events for your Community Group to be included in future issues, please email the web administrator. Don't forget to include your postal address if you would like a paper copy.

Some of the news items have been taken from articles in the national press and other publications and SCAN cannot be held responsible for any loss, damage or inconvenience caused as a result of any inaccuracy or error in an article that has not been independently substantiated. The inclusion of hyperlinks to these websites does not imply endorsement of any material on such web sites or any association with their operators services or products.

Dramatize is a theatre company for individuals with learning disabilities. We run theatrical workshops, performances and events exploring different theatrical mediums, breaking barriers within society.
Our mission is to make theatre accessible to all and change the perceptions of artists with disabilities.
We work with a range of different levels of ability, providing care and support, to ensure the theatre industry is accessible to all. Dramatize encourages our service users to believe in themselves, to develop and achieve the unexpected.

Dramatize invites you to join our fun theatrical workshop, exploring different methods of acting through an array of games and exercises. The workshop runs from JANUARY 2019, Thursdays, 10.30-11.30am, term time only at Colnbrook Village Hall, Slough.

To find out more and book your free taster session, please contact Karen on: 07785187748 or email Karen@dramatize.co.uk

Edited transcript from BBC New/Disability podcast presented by Emma Tracey with Rachel Shapey, Josh Wintersgill and Samona Williams.
This is the Ouch podcast, I'm Emma Tracey and with me today are three disabled entrepreneurs who Sir Stelios, the founder of EasyJet, thought had such good business ideas that he gave them a massive cash boost at his business awards ceremony recently, which is run in conjunction with Leonard Cheshire Disability charity. Rachel Shapey, Josh Wintersgill and Samona Williams.

Let's start with Rachel. You were one of the finalists and you won £10,000 from Stelios. Tell me a bit about your business and what you're going to do with the money that you got.

RACHEL - My business is an online music education platform called I Can Compose. I used to be a secondary school teacher and I've created lots of resources and online courses to help students with composing their own music. It's just fantastic to have won this prize because I can now step up the marketing, I can visit some music education conferences and have a trade stand, so I can really move the business forward now.

SAMONA - Cocoa To Thrill is a bespoke personalised chocolate gifting service. We make fabulous extraordinary chocolate. One of our signature pieces is a chocolate stiletto which is adorned in pearls and edible gold. We're absolutely thrilled to have won the Stelios Award. And now it means that our business can now expand and we can bring more chocolate and more gifts to people all over the world.

JOSH - I'm the founder and director of Able Move Ltd. It's a company designed to improve the lives of people with physical or reduced mobility in order to access aircraft from a transferring point of view. We've designed a product, which is like a sling that's combined into a seat that goes in the wheelchair on the day of travel and it's used by the ground crew and cabin crew if need be in emergencies to get you on and off the aircraft.

I've got spinal muscular atrophy type 3, which is a muscle wastage disease. I was diagnosed at 18 months old. As I get older my physical needs have got worse and worse, which means I can't dress, walk, stand.

Getting on and off aircraft has become particularly difficult because I can't transfer myself. It's a very unpleasant experience. It tends to be very rushed. And I thought, there must be a better way of getting on and off aircraft. I thought about a sling and I thought about a seat, because I was getting uncomfortable on the plane, I thought why not let's try and put the two together. And from that I've basically brought the product together into one solution.

EMMA - Now, the latest Office of National Statistic figures say that there is a 31% disability employment gap, which means that 51% of disabled people are in employment as against 81% of the general population. And Leonard Cheshire are also part of the Stelios Award, and Neil Heslop the chief executive says that it's this employment gap and barriers to employment that sometimes forces disabled people to become entrepreneurs. Is that part of the reason why any of you became an entrepreneur?

RACHEL - I really wanted to be able to work more flexible hours. And being able to work from home is a real advantage for me because I've got two young children.

I've got MS, which is quite stable at the moment. But working on my own business is just fantastic. I've never felt healthier actually since I've started the business. I think teaching is notoriously a stressful career to have, and it's quite inflexible, just the nature of the job: you're on your feet all day, anything can happen. There are lots of deadlines to meet. You're working in the evenings as well. I'm just in charge of my own time now and I'm doing what I love. I feel like I'm still teaching but I just don't have a classroom anymore; I'm just doing it in an online way.

EMMA - One in five employers would be less likely to employ a disabled person according to a fairly recent research by Leonard Cheshire. And almost three out of four of those line managers asked said that they'd be worried that disabled people wouldn't be able to do the job. Now, this kind of brings me on to the disclosure thing and whether you admit to having a disability or not. What do you think?

SAMONA - I suffer from Ehlers-Danlos type 3. It's a rare condition which affects the connective tissues in the body, so all the connective tissues in the body are weak. That basically means that it affects people in lots of different ways depending on where they've had tears or breakages in their connective tissue. So, for example with myself I had a stomach collapse, a throat collapse, and I also had a stroke where the artery collapsed going to my brain.

I always describe it as being like a Duracell bunny, so you're given a certain amount of energy and you have to manage that energy. I have to plan everything weeks in advance; I can't take a meeting the next day; I can't take a phone call immediately. Everything has to be scheduled and everything has to work around my energy levels and what I'm able to do. Every task is concentrated so once that time for that task is up I have to stop that task.

JOSH - People that have got disabilities know their disabilities better than anybody else. And in order for employers to really understand your situation the best way is to be open, honest and transparent, because not every employer is going to know about every single disability under the sun. So, I think people really need to just voice to their employers, be open, because everybody's different. Some people like to communicate their disability; others don't, for various reasons. The more people can communicate about their disability the better.

EMMA - Tell me your advice guys for disabled people who might be struggling in another job, who may not be working because of their disability, like you were for some time, Samona, and who have an idea and want to start working for themselves or start their own business. What is your advice from both of you for them?

JOSH - People need to assess what they're capable of doing first, and if they feel like they're ready to take the jump then they've got to go for it. I think it's just having that drive and determination just to go for it. I'd encourage others that have got a business idea, that have got a disability to just go for it, apply for the Stelios Awards next year.

SAMONA - I do echo Josh's thoughts on knowing that you're ready to do it. I think that's important. When you're lying in bed and you're staring at the ceiling and you're in lots of pain and your mind is whirring about what you're going to do next and that idea, that spark does come to you develop on it, use that to distract you from whatever is going on around you. And don't believe that that environment or what you're around at that time will be always the case.

Things like the Stelios Awards are invaluable, and let's hope that more people cotton on to the fact that disabled people make the best entrepreneurs because we've been through every challenge under the sun. I can guarantee that most disabled people have had challenges that able-bodied people couldn't imagine and are able to get up when there's a business crisis. And so they make fantastic directors of companies.

EMMA -This has been the Ouch podcast. You can find us on BBC Sounds, and please tell your friends about us. You can contact us ouch@bbc.co.uk is the email. We're on Facebook @bbcouch, Twitter @bbcouch. You can find all our stuff at bbc.co.uk/disability.

Edited from The Guardian November 2018
Private housebuilders have been accused of “appalling self-interest” over their lobbying against building more accessible homes for disabled residents.

The Home Builders Federation (HBF) has been objecting to councils across England that wish to fix new targets to increase the number of homes with room for wheelchair users and which could be adaptable. It has made submissions to at least 17 authorities, from Liverpool to Sevenoaks, arguing that new local planning policies seeking more accessible housing could make it unprofitable to build new homes. The submissions also question whether predictions of an ageing population mean an increased demand for adaptable and accessible housing would be certain.

Charities including Age UK, the Centre for Ageing Better and Disability Rights UK said on Tuesday they were alarmed at its objections to planning policy proposals to make greater disability access mandatory. It said only 7% of homes were classed as accessible and that building to a higher accessibility standard would cost about £500 more.

The HBF represents highly profitable housing firms including Persimmon, which recorded gross profits of £565m in the first six months of this year, during which it built 8,000 new homes – a margin per home of about £70,000.

“Without homes that enable us to live safely and independently for as long as possible, we will see increased and unsustainable pressure on our health and social care services and much-reduced quality of life for people in older age,” the charities told the HBF in an open letter. Unless it was enshrined in local planning policy, it remains optional under national regulations to incorporate features that make new homes suitable for people with reduced mobility and some wheelchair users. It also remains voluntary to make them fully wheelchair accessible, unless town halls make it mandatory.

Objections have been raised by the HBF where it believes councils have not taken into account the financial impact of the proposals alongside other demands such as the provision of affordable housing and said that if a council wanted to prioritise disabled access, it should reduce its demands for affordable homes.

An HBF spokesman said: “New homes are already more accessible than those built previously, but not all homebuyers want a home that has been adapted for accessible use.

“If government deemed that all homes should be built to higher accessibility standards it could make it a requirement. Currently levels are set by the planning system, which specifically requires local authorities to provide evidence to support their demands.”

“Their attitude is appalling self-interest,” said Cllr Pam Thomas, a wheelchair user and cabinet member for inclusive and accessible city at Liverpool city council, which has faced objections from the HBF to its plan to make 10% of new homes wheelchair accessible. “If they looked at this properly, they would realise there wasn’t a problem with the cost or [extending] the footprint. They need to have a social conscience here.”

NB: Note from the Editor
For compliance with Building Regulations 2010 there are three categories of access to dwellings:

• category 1: visitable dwellings
• category 2: accessible and adaptable dwellings
• category 3: wheelchair user dwellings

Only category 1 is mandatory. Category 2 and 3 are optional and can only be enforced where a planning permission condition requires either of those categories.

Edited from article by Victoria Venables on themighty.com
When people talk about the “isms” in society, racism and sexism are usually the first that come to mind. Later in the list comes ageism. Often forgotten and misunderstood, is ableism. - Discrimination or prejudice against individuals with disabilities.

In the last nine months of my life, I have thought a lot about ableism. A year ago, when I whole-heartedly identified myself as “able-bodied,” I never even considered the nuanced meanings of “disabled” or “abled.” I assumed that, like the other “isms” I’ve learned about or experienced, the categories were cut and dry. You were either “able-bodied” or you were “disabled.” I never imagined I would one day live in the grey area.

On some days, I am undeniably disabled. I am in bed or, if I must go out, I’m in the wheelchair. On other days, I am walking on my own. That lasts for about six hours, then I crash. On most days, I am somewhere in between. I wake up feeling achy and tired, so I take my medication and monitor my stats. I concentrate on my breathing when I have to take the stairs. I position myself away from sharp edges in a room to ensure that a surprise syncope episode won’t result in cuts and bruises. I stand up slowly and brace myself against furniture or people around me, and sometimes I have to sit right back down and try again.

That is the grey area for me. I can walk and stand on my own, sometimes. I need a wheelchair or help from my loved ones, sometimes. This is how I discovered the ableism that is hidden in disability binarism.

This is the idea that disability is black and white; you are either able-bodied or disabled. This simplistic thought process is damaging to anyone who finds themselves in the grey area of disability, which is a huge portion of the disabled community.

It leads able-bodied people to dismiss the experiences of disabled people if they see any evidence of ability.
to uninformed assumptions about other people’s bodies and experiences.

I have found that disability binarism is one of the biggest driving factors for the ableism I have experienced. I think that this is because I was once able-bodied and I have transitioned into a period of my life where I am now in the grey area. Those around me, weren’t always part of the transition so they do not understand my life in the grey area.

I use my chair because it is the safer method of transportation. However, it uses a lot of energy to push myself, so when I can, I park my chair and I walk on my own. Seeing me in the chair one minute and then walking the next has confused a lot of people.

My appearance of a disability and then ability to function “normally” is not some mystery you are entitled to solve. Everybody has their emotional baggage that they must deal with; mine, unfortunately, is on display, and satisfying your curiosity at the expense of my comfort is not my responsibility.

Finally, let’s take a minute to realized that somewhere at some point, someone watched a disabled person stand up and reach for something in a store and, instead of politely offering assistance or just going on with their life, took a picture and made a joke out of it. That is ableism: witnessing a moment from a disabled person’s day, taking ownership of it and turning it into entitled entertainment for yourself.

Living with a disability can be hard. Living in the grey area is hard for me. My day can be tainted with the fear that uninformed bystanders will dismiss the severity of my disability. If you see me walk today, will you doubt my need for my wheelchair tomorrow?

Edited from disabilityrightsuk.org November 2018
A survey of more than 600 disabled people revealed that many raided their budgets for food, housing or heating or went into debt to pay for the basic personal support they need for day-to-day survival. Some 40% said charging had increased substantially over the last two years – often by more than half.

The Independent Living Strategy Group - a network of disabled people’s organisations and their allies Chaired by Baroness Jane Campbell of Surbiton - conducted the survey that uncovered wide variations between local authorities in both the amount they charge for social care support - and who they charge.

The study aimed to establish whether charging is undermining people’s wellbeing and independence – key features of social care services under the Care Act 2014. It concluded that additional stress and the need to cut back on other living essentials show that it is.

Baroness Campbell, said: “Support provided under the Care Act is meant to improve the wellbeing and independence of disabled people. By charging many for that support, the system is making a mockery of the spirit of the legislation and causing worry, stress and poverty. Charging raises a relatively small sum of money which is pushing up costs elsewhere. The financial impact of personal care neglect such as pressure sores, kidney infections or falls, as well as stress related illnesses, means finding extra resources for the NHS”

The money raised through means-tested charges represents only a tiny fraction of the £7 billion removed from social care budgets since 2010.

Only 17 of the 152 councils which provide social care know how many people declined or abandoned social care packages they had been assessed as needing once they learnt how much they would have to pay.

Although the report calls for social care charges to be scrapped (as they have been in the London Borough of Hammersmith and Fulham), it proposes other recommendations for the Government and local authorities if that call goes unheeded. These include:

•A requirement on councils to provide clear information on how charges are calculated and the right to appeal
• Councils should monitor the proportion of people who decline – or give up – care packages following a financial assessment
• All councils should undertake an equality impact assessment of their charging policies
• Local authorities should work with disabled people’s organisations to agree what costs and income should be included in financial assessments.

Sue Bott from Disability Rights UK said: “If councils are to persist in this iniquitous tax on disability, they must at least reintroduce some consistency and clarity to their approach. The many councils that have failed to conduct an equality impact assessment – and to monitor the numbers of disabled people driven out of the care system by charging – must also get their act together.”

The full report is available from the Disability Rights web site

Edited From TfA website November 2018.

In August 2018 we (TfA) carried out a survey to find out more about peoples’ experiences of trying to access patient transport services. Through this we have gathered a number of case studies that demonstrate how unfair patient transport eligibility criteria affected peoples’ lives and mental and physical wellbeing.

“Desperate, anxious, humiliated – the questioning was aggressive” – Royal Free Hospital patient
“I felt very hurt. I have never abused the system” – Royal Free Hospital patient

“I felt stupid and they made me feel like I am a burden to everyone” – Barnet Hospital patient

The majority of those found ineligible felt that their health or personal safety was put at risk by having to make their own way to hospital. For some it was impossible to make their own way to their appointments, leading to cancelled or missed appointments.

“A two-and-a-half-hour journey (each way), vomiting due to my chronic condition, exhaustion, increased anxiety” – Royal Free Hospital patient

“I fall often when in unfamiliar environments. I also suffer from a choking disorder and confusion especially when under stress... For me the journey to the hospital is a huge undertaking and a very frightening prospect” – Chase Farm Hospital patient

“I cancelled all of my hospital appointments as no one seems to care” – Homerton University Hospital patient
Responses to our survey indicated that many people felt that their health or personal safety was put at risk by having to make their own way to hospital after being denied patient transport. People reported feeling “desperate”, “a burden” and “humiliated” after being interrogated by call centre staff about their need for patient transport. This is unacceptable.

The top three most reported hospitals (Royal Free, Barnet and Chase Farm) are all run by the Royal Free London NHS Foundation Trust. This highlights a significant problem with the way that the Royal Free Trust manages its patient transport services.

Over the past several months, Transport for All (TfA) have received an increasing number of calls to our Advice Line from Disabled and older people who were denied patient transport despite previously being eligible.

At the moment, a lack of clarity within the guidance provided by the Department of Health and Social Care has allowed individual NHS Trusts to implement their own eligibility criteria. In some instances, the eligibility criteria used by hospitals is not robust enough to ensure that all Disabled and older people with a real need can access the service.

This has led to many people being turned down for vital patient transport when they need it the most, sometimes in spite of previously being eligible at the very same hospital.
We have been supporting individual patient transport cases that come through our Advice Line and we will continue to do so. If you feel that you have been unfairly turned down for patient transport please get in touch with our Advice Line - 020 7737 2339.

We are now in the process of writing to the Department of Health and Social Care and to patient transport services at hospitals across London to highlight the seriousness of this issue and to call for immediate improvements to the way that people are assessed for patient transport.

You can read more about our survey findings and read real patients’ stories on the patient transport campaign page.