Inclusion Scotland

Working towards a society where disabled people are equal citizens

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The DWP needs reform denying my deaf, blind daughter benefits shows this


Ava was born in the summer of 2006, a healthy, happy baby who thrived and met all of her developmental milestones.


In 2008 we moved to Germany when my husband’s job – for a British company he had worked for since leaving university – took us there. It was to be a three-year secondment for him and a work hiatus for me.


Just before Ava’s third birthday we noticed changes in her demeanour, subtle at first and then more obvious. We visited doctors, audiologists and paediatricians, where I was made to feel like an over-anxious mother. Then, at the end of November 2009, Ava was rushed to hospital with a suspected brain tumour. And so began an emotionally painful, three-year journey to try to find a diagnosis for our precious girl.


By the time Ava finally received a diagnosis, she was profoundly deaf, certified blind, had lost mobility and was starting to suffer from breathing and swallowing issues. Brown Vialetto Van Laere syndrome was the name put to this neurally destructive disease, of which there have been only 74 cases worldwide in 100 years. We started a trial of high dosage riboflavin therapy, which began to slow the decline in her health, and we even saw some small improvements in her mobility, breathing and swallowing.


By now we had been in Germany for more than five years, unable to leave as the research into Ava’s condition and her treatment was taking place there. But time had passed and we were finally able to lift our heads to survey the life around us. With Ava medically stable we prepared to return to the UK. Ava was educationally behind and was learning to talk using her hands, so she needed the support of the signing community. We had left the UK with a healthy child and were returning with one with complex needs and requiring a myriad of support. My husband stayed on in Germany to conclude his extended contract: his employer had been simply brilliant with us and in return he felt he should quite rightly finish what he had started with them.


Myself and the girls returned in November 2013 and as a matter of course I began to put into place the services Ava would need: medical, educational, social and financial. We applied for disability living allowance (DLA) for Ava and motability benefits, and after consideration by the Department for Work and Pensions (DWP) she was awarded the highest rate for both. As her sole carer, and supported by our local council, I also applied for carer’s allowance. This is where the wheels came off the cart. I was denied, even though Ava was receiving DLA, and I was told I must go to an appeals tribunal.


On the day of the final court submissions in February this year, we received the first of two letters saying Ava’s DLA had been rescinded because her father pays the equivalent of national insurance in Germany; two days later we received another letter saying she was not disabled enough to qualify. We spoke four times that day to the DLA team, who could not explain comprehensively why the benefit had been withdrawn. But the timing – and the fact that no DLA meant no carer’s allowance – was not lost on us.


I saw red, I was so angry. We have been through so much with Ava, I have never shied away from a battle on my daughter’s behalf and I was not about to start.


So I posted about it on social media. I did not expect it to go viral. I had thought perhaps that it might provoke a little local interest but I have been astounded by the outpouring of support, the kind words and shared stories that we have received. And yet it saddens me that so many people have been mishandled, treated poorly and feel such anger towards the very department that should support them, the most vulnerable of our society.


What I see now is that this story transcends Ava’s case: that at the heart of this is a need for reform, along with clear and open dealings and educated decisions. Those working on the frontline of the DWP need to be trained properly, to understand the legislation they are applying, to have the time to review each case and to work to transparent guidelines.


It shouldn’t take an eight-year-old disabled girl and her angry mum to bring about change.


The Guardian

'I change my disabled son's nappy on urine-soaked floors'


When faced with no suitable public toilets for her severely disabled son, Samantha Buck decided to take action.


'Some parents of disabled children don't like me saying this because it's not PC, but physically changing Alfie's nappy is like changing a giant baby,' says Samantha Buck.


Alfie Buck is eight and is almost as tall as she is. He has quadriplegic cerebral palsy and is doubly incontinent.


'We changed him on a baby changer until he was five,' Buck continues. 'Then it started to get a bit heavy, a bit hard.' She says that Alfie is now almost as tall as she is.


When they received a key from the council which allowed them to use accessible toilets in their area, the family were excited. Buck says she assumed there'd be 'something that looks like a giant baby changer' inside, but was upset to find just a slightly wider room that's only suitable for people who are able to use it them by themselves - not for those who are less able and need assistance.


Buck says Alfie has to be changed rapidly - otherwise he quickly smells, and his faeces will begin leaking out of the side of his incontinence pad, into clothes and on to his wheelchair, which then takes a day and a night to dry out.


In order to change Alfie in a standard accessible toilet, Buck has to 'heave him out of his wheelchair and drag him onto the floor', ensuring that she remembers to put a mat down first because toilet floors are often muddy and urine-soaked. Then she has to put Alfie's wheelchair outside the door to make enough room. She worries every time that his wheelchair will be stolen and she won't be able to get him home.


'If there is somebody with me to help, they can pass wipes and nappy sacks through the open door,' she says. 'Otherwise I have to get up off the floor and leave Alfie lying there with his arms and legs flying all over the place. It's just awful.'


With more space and a changing bench, she says, the process would not be so degrading.


Though he can't talk, Alfie doesn't have a learning disability and Buck says she can tell what he wants to communicate by the sounds he makes, or through his eye movements - one way for 'yes' the other way for 'no'. She can tell he feels uncomfortable and is embarrassed when he has to be changed in unsuitable situations.


At home Alfie is learning to communicate with words using a computer which he can control with his eyes and his mum says he loves family trips out in their accessible van.


The van is important to their family, Buck explains. With only 700 suitable public facilities in the UK, they often have to change Alfie in the back of it - and because the van is too tall to get through barriers at multi-story car parks, changing pads mostly happens whilst parked on a street.


When she asked other people in her situation how they get around the toilet problem, they told her they just don't go out. But with two other children, Buck says this isn't an option for her family. 'It's shopping, meeting people, days out and hospital appointments. It's about living,' she says.


The Changing Places campaign, led by learning disability charity Mencap, works to get more suitable toilet facilities installed for people like Alfie, whose needs aren't met by regular accessible loos. The campaign estimates that nearly a quarter of a million people in the UK with 'severe disabilities' could benefit.


At 12 square metres, official Changing Places toilets are much bigger than the average accessible loo. They contain a hoist to lift a person from their wheelchair, and a full-sized adjustable changing bench for those who are incontinent, or to help those with limited movement undress before being hoisted to the toilet.


Seven UK airports, including Stansted and Heathrow have one, and some football stadiums such as the Emirates and Wembley. With 700 installed so far, the UK leads the way. Buck says thousands more are needed if they are to get out and about without meticulous planning.


'People just don't want to know,' she says. 'It's disgusting to them because you are talking about people pooing themselves. But it's an everyday reality for us.'


After a long, hard struggle to get a Changing Places toilet installed in her local town of Horsham, Samantha took drastic action. 'I ended up copying in the top councillors and our local MP, with photographs of Alfie lying on one of their toilet floors. I also copied in the West Sussex County Times, who picked up the story', she says.


'The council were embarrassed, so they had to do something.' They said that an official Changing Places toilet would be too big and expensive to put in as equipment costs from £10-£15k, and then there are the varying installation costs depending on the setting.


Samantha did her homework to find the cheapest equipment and compromised on size. Now, she says there's an 'as good as' toilet facility at her local swimming baths. The council says they were 'delighted' to be able to identify a suitable, affordable location for the new toilet and are 'committed to improving facilities for disabled people and their carers'.


Their online map of official accessible facilities gets over 4,000 hits per month. The site also has listings of toilets which are good but don't meet their published criteria.


When out in Horsham at least, Buck is pleased that Alfie no longer has to suffer the indignity of being changed on a cramped and dirty toilet floor with the door ajar. 


BBC News

Drunk care worker force-fed cheesecake to blind woman at Abba tribute


A care worker got drunk at an Abba tribute night and force-fed cheesecake to a blind woman with learning difficulties.


Anna Stevenson, 35, a worker with independent social care company Care UK, put the woman in a choke hold at the party at Aberfoyle's Rob Roy Hotel.


Then she 'shovelled' cheesecake in her mouth and called her a pig and greedy b*****d, Stirling Sheriff Court was told.


The incident was witnessed by a retired senior social care assistant, a retired palliative care nurse and former social work carer who told the hotel manager and the police were called.


Stevenson, said by police to be unsteady on her feet and slurring her words, was interviewed over a five-hour period at the hotel, while officers also checked on the well-being of her victim and another vulnerable adult in her care.


Stevenson, from Shotts, Lanarkshire, was found guilty after of wilfully neglecting a patient in her care, failing to respect her dignity, using abusive, demeaning and insulting language to her, putting her arm round her neck and force-feeding her.


The court heard the incident occurred after Stevenson and another Care UK support worker had taken the blind woman and another woman with learning difficulties for a night at the Rob Roy on February 1 last year.


After arriving about 3.00pm, the care workers and their charges went to the bar and then to their rooms to get ready for the band night.


By the time dinner was under way, however, Stevenson's behaviour was already attracting the attention of other guests.


One witness, Helen Fearon, 66, who was at the hotel with three friends and ended up being seated on the same table as the Care UK group, said: 'You could tell right away that she was really drunk.'


Ms Fearon, a retired senior social carer specialising in the care of older people, said at one point both carers left the vulnerable women on their own.


One of the vulnerable women said 'they have gone away and left us, and we're not supposed to be left by ourselves'.


Ms Fearon said: 'We sort of ascertained then that they were carers and service users. They were gone for more than five minutes - it could have been ten.


'Then the waiters served the sweet course and put a dessert in front of the blind lady.'


Stevenson, she said, then 'came round behind her and put her in a choke hold.”


She said: 'It's the only way I can describe it. Her arm was round the blind woman's neck.


'She was shovelling desert into her mouth and calling her a greedy b*****d.


'She was drunker than I first ascertained her to be. There was nothing funny about it - she wasn't laughing, she was quite serious.'


Ms Fearon said she challenged Stevenson, who replied: 'How dare you.'


She said Stevenson then turned to the other vulnerable adult, told her they were 'getting flung out', and left. The other carer then left as well, with the blind woman.


Retired palliative care nurse Mrs Julie-Anne Meek, who was also sitting close by, said Stevenson was 'barking like a dog' and saying to the blind woman, 'look at the state of you, you're an embarrassment'.


Mrs Meek said when Stevenson tried to force-feed the blind lady, the other carer just laughed. She said Stevenson was 'extremely drunk'.


She said the 'whole hall' heard Stevenson's remarks to the blind woman, who had food all over her chin as a result of Stevenson's actions.


Former social work carer Pamela Allan, 53, said Stevenson's treatment of the woman was 'completely undignified' and she had called the person she was supposed to be caring for a 'greedy pig'.


She said: 'I shouted ‘right you, that's enough' and we spoke to the manager. We had concerns over the standards of care.'


Stevenson said she had 'absolutely never' mistreated the woman.


She said: 'I made the mistake of having a glass of wine, but I've never hurt anybody, ever.'


Sheriff William Gilchrist fined Stevenson £500.


He said: 'I find it difficult to understand how three independent witnesses who were within feet of this incident could possibly have all misunderstood what was happening.


'As to why it happened, people do behave strangely and badly when under the influence of alcohol and the only conclusion I can reach is that it was because the accused had too much to drink and that affected her behaviour.


'I am satisfied that what you did was out of character.'


The court heard Stevenson had given up her job after the incident and would never work in the sector again.


STV News

If I were Prime Minister: I'd restore the dignity of disabled people and give every nurse a pay rise


If I were Prime Minister I would restore the dignity of disabled people, who are currently paying the price of austerity in blood. The books are currently being balanced – or frankly, not balanced – on their backs, and on the backs of the unemployed and working poor. In other words, the people who did the least to cause the banking crisis, and who are least able to withstand austerity.


So I would invert the austerity pyramid. From now on every single piece of legislation passed by my government would have to have a test – does it reduce child poverty? There is absolutely no excuse for children to go hungry in the seventh richest country in the world.


I would implement a living wage lifting people out of benefits. I would outlaw zero hours contracts unless an employer could satisfy a committee they were absolutely essential to their individual business and then monitor them. I’d embark on a social and affordable housing building revolution not seen since the postwar period.


I'd end the Bedroom Tax, and save the axed Independent Living Fund (for Britain’s most profoundly disabled people) for current users, while a new model is designed for the future. And my government would ban private companies profiting from huge government contracts, passing them back into the hands of the state or social enterprise.


I’d explain to the country that the cost of benefit fraud is £1.1bn and the amount underpaid to claimants due to error is £1.6bn. And that the 'tax gap' caused by avoidance and evasion is £34bn by conservative estimate and could be as much as £119bn. Every penny from closing that gap would go to lifting families out of poverty.


I would stop the voracious privatisation of the NHS and give every nurse a pay rise. I would give the country a new bank holiday – Nye Bevan Day. (If the name doesn't ring a bell, Bevan spearheaded the establishment of the NHS in the 1950s.)


I would also make all companies publish their inequality gap – between the highest and lowest paid. I’d end the gagging law and free charities to be the check and balance society needs. I’d bring back legal aid because without it there is no possibility of social equality.


I would want to reform the House of Lords and the Royal Family and change the national anthem to something by The Clash, but I would be worried it would take up too much parliamentary time. There’s so much to do.


No more PMQs, I’d have to answer to a weekly people’s panel – a jury chosen at random to account for all the things I’d done. I would make every act of lobbying visible. Schools would have to teach every child politics and register every leaver to vote.


I would end the social and cultural apartheid of free schools. I'd twin every UK school and university with one in a developing country. Tuition fees would be replaced by a gentle graduate tax with incentives for the poorest students.


I would reorganise our broken food system, challenging the vast waste of edible food and the scandal of food poverty. I’d renationalise the railways and embark upon a huge renewable energy programme and tell the frackers to frack off.


I’d restore a period of peaceful engagement abroad, and at home dedicate resources to bringing communities back together. I would consider an amnesty for undocumented people and a fresh start on immigration. I would hold an inquiry into why so many young black boys are still dying on the street.


I would appoint a team of Child Abuse Czars who would poke into every dark corner of the establishment. And I’d hold a root and branch review on drugs policy looking at all the options – including legalisation – because so many lives are being lost and destroyed and the current system has utterly failed.


I would fill Chequers with homeless families who would be allowed to live there until homelessness was solved. The huge garden at 10 Downing Street would become an allotment serving the Westminster Foodbank.


I would never tell a lie.


I would answer the front door at No 10 myself and welcome campaigners in. If you’ve collected 100,000 signatures the PM should make you a cup of tea and see what the problem is.


That would just be day one.


The Independent

Murphy: we need a new relationship between third sector and the state


Scottish Labour leader Jim Murphy has pledged to forge a new relationship between the state and the voluntary sector.


He also said new ways have to be found to secure funding for third sector organisations in order to end the uncertainty of them existing hand to mouth.


Murphy claimed a future Labour government would look at five-year – or “parliament-long” - funding deals.


He also pledged to set up a Civil Society Council in elected.


This would be a forum where charities and others could hold government policy to account and scrutiny.


Mr Murphy made the pledge at the Scottish Council for Voluntary Organisations (SCVO) Gathering in Glasgow’s SECC.


The two day event has seen a series of promises made to the third sector by senior figures in Scottish politics.


Social justice secretary Alex Neil announced there will be £6.1 million funding for Community Jobs Scotland to help the third sector create 1000 more jobs.


He also promised “a new social justice agenda will put communities and people at the heart of decisions affecting them.”


Meanwhile, in an exclusive eve-of-Gathering interview with TFN, First Minister Nicola Sturgeon committed to look at implementing three year funding deals for the third sector.


Murphy’s pledge trumped this. He said year to year funding, which creates a massive sense of job insecurity in the sector, “wouldn’t be acceptable anywhere else in the economy”, adding: “it’s unacceptable for workers to live with potential redundancy notices being handed to them year after year.”


In his speech, Murphy said: “The voluntary sector has a vital role to play in criticising and challenging government.


“It is crucial that a strong third sector feels able to do this wholeheartedly without ever worrying that your policy decisions will affect your funding.


“That means secure, long term funding for the sector.


“For years politicians and the sector have discussed how short-term funding holds back the third sector from delivering its full potential.


“In my discussions with voluntary sector organisations I have heard over and over again that many in the sector are often left with no idea whether they will have continuity of funding and, in some cases they are told with a month of funding left to exist.


“I recently heard this loudly and clearly in a meeting with the sector in Aberdeen.


“It’s time to give the third sector the security it needs.


“Both government and the sector want to demonstrate that the funding is making a real difference to people’s lives but I think there is a more sustainable and successful way of doing this.”


As well as increasing funding timescales, he said all funding decisions should be made by January before the end of the tax year.


He said a permanent Civil Society Council would allow the third sector to play a part in the “restructuring of power” across Scotland.


In his speech, Murphy also promised to bring in legislation which would end zero hours contracts and to reform taxation in order to redistribute wealth, including implementing a so-called “mansion tax”.


He said: “My socialism is the language of priorities. It isn’t just enough for people to claim to be on the progressive left – they must show it by putting forward real policies that lay bare their real priorities.”​


Third Force News

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