Disabled people who receive support through the In

first_imgDisabled people who receive support through the Independent Living Fund (ILF) have been caused fear, stress and anxiety by the process leading to its closure, according to new research.A seminar organised by the campaigning disabled peer Baroness [Jane] Campbell heard that ILF-users interviewed about the reassessments of their care needs they had been given by their local authorities said they had found the process bureaucratic, inflexible and unprofessional, compared with the empowering and flexible nature of ILF.Introducing the seminar, Baroness Campbell said she was “not going to apologise for the disruption outside”, caused by a high-profile protest by Disabled People Against Cuts against the ILF closure (pictured).She said: “It gives this day even more meaning, I think. We have the deadline of the closure of the ILF at the end of the month, and we have people outside who have come to demonstrate their frustration and anger over their reducing care packages.”The fund – which helps nearly 17,000 disabled people with the highest support needs to live independently – is due to close on Tuesday (30 June).The Department for Work and Pensions has promised to transfer one year’s worth of non-ring-fenced ILF funding to councils in England, and to devolved governments in Wales and Scotland.Dr Tom Shakespeare, a leading disabled academic and now senior lecturer in medical sociology at the University of East Anglia (UEA), told the seminar at the House of Lords that the research showed local authorities appeared to have a “very minimalistic interpretation of independent living principles”.He said that the uncertainty and bureaucracy of the transition process were causing “fear, stress and anxiety” among ILF-users.His team carried out in-depth interviews with 12 ILF-users with physical impairments – across six local authorities in Greater London and East Anglia – earlier this year, and only one of them said they had found the re-assessment process by their local authority to be a positive experience.One said the council assessor had treated them as if they were stupid, while another said their local authority had been “not very professional”.When asked how they felt about the assessment, one said: “Can I use the word ‘crap’? Because crap is how it makes you feel… crap.”One ILF-user said: “It is not fear of change but my fear is people haven’t really thought it through.“They are asking us to give up something without really knowing what is in its place.”Another said there was a “vagueness” about the reassessment process.Shakespeare said of the 12 people who agreed to be interviewed: “They do recognise there are budgetary restraints but they feel their needs and rights to participate will not be respected.”Only one of the 12 said he was not worried about what would happen to his support package as a result of the ILF closure and being reassessed by his local authority.Sue Bott, deputy chief executive of Disability Rights UK, told the seminar: “For people with high support needs, what we need is a national system, because a local system just doesn’t work.“Local authority budgets just cannot cope with the differences in numbers of people with high support needs in their area.”The research was funded by the Economic and Social Research Council (ESRC), with support from the user-led organisations Independent Living Alternatives and Equal Lives.The research adds to evidence compiled by Disability News Service (DNS) of delays to the transition process and cuts to people’s care packages, with many ILF-recipients yet to be informed by their local authority how much support they will receive once the fund closes next week.Last week, the Association of Directors of Adult Social Services (ADASS) admitted to DNS that there were problems with the transition process, insisting that central government was to blame.The Scottish government announced last year that it was setting up its own ILF, for both existing and new users in Scotland, using the UK government’s funding and an additional £5.5 million of its own money.The Welsh government has opted to transfer the Westminster funding to its local authorities – with conditions attached – and will protect the budgets of existing ILF-users for the first nine months, with funding after that dependant on the UK government’s next spending round.The seminar also heard about another piece of research, carried out by UEA and the University of Essex, into older people’s disability costs and disability benefits.Ruth Hancock, from UEA’s health economics group, said they had concluded that the disability benefits available to older people – attendance allowance (AA) and disability living allowance (DLA) – were “well targeted at people who have relatively low incomes, people who have difficulty affording the costs that disability brings in later life”.She said: “Some people have suggested they are not well targeted; our conclusion is that they are well targeted.”Their research also found that only 13 per cent of disabled people aged 65 and over received AA or DLA, and just 2.5 per cent received council-funded social care, while less than half (47 per cent) of older people with the highest support needs received either DLA/AA or council-funded social care.Hancock said: “We should be much more concerned about the people who do not receive help than maybe those who do receive help and in some people’s views do not need it.“The current system fails to prevent deep poverty among many older people with disabilities, allowing for personal disability costs.”Shakespeare told the seminar that disabled people “do not want to be seen as needy and vulnerable and desperate”.He said: “The discourse that we have is we are going to separate out the undeserving from the very needy, but I think that small amounts of personal assistance or small amounts of benefit can make a huge difference for many, many of us.“I want to get away from the idea that these are desperately vulnerable people who want to be looked after and [move the discussion] back towards rights. We should be using the funds we have to help people participate and flourish.”Meanwhile, a group of disabled campaigners and organisations, including Baroness Campbell and the writer and researcher Jenny Morris, are looking for disabled people who access support from their local council to take part in a survey about changes to independent living.The deadline to take part in the survey is 30 June (Tuesday), and the group aims to carry out follow-up work over the next two years with those who take part, if they agree to leave their contact details.The group – which includes disabled people who were part of the independent living movement in the 1970s, as well as younger activists and others concerned with the future of independent living – have been meeting over the last two years to discuss how to “move the independent living agenda forwards”.last_img read more

Protesters have warned the National Autistic Socie

first_imgProtesters have warned the National Autistic Society (NAS) that it needs to listen to the voices of autistic people or face being “sidelined”, in the wake of the Mendip House abuse scandal.Representatives of three autistic rights organisations were protesting outside the charity’s London headquarters (pictured) about its failure to act on the regime of abuse that took place at the Somerset care home.They saidthe scandal was a “wake up call” for NAS.Protesterswarned the charity that the autistic rights movement was growing ever strongerand that NAS must do more to listen to their voices.Two familiesof autistic people who were abused at Mendip House in Brent Knoll, Somerset, were alsoat Friday’s protest, and provided Disability News Service (DNS) with furtherevidence of how the charity had failed their relatives.The familieswere highly critical of NAS, the Care Quality Commission (CQC) and the policefor their failure to stop the abusive regime earlier, and to provide justicefor their autistic relatives.Among thoseprotesting was Joseph Radford, a member of the organising group of Neurodivergent Labour, which launched in February.He said hismessage to NAS was that “autistic people are not going to take this anymore”.He added: “Weare organised. There are more of us. We are not going to be fobbed off. “We are agrowing movement. We are speaking with a clearer voice.“You can’tkeep sweeping stuff under the carpet anymore because if you do there will be pushback.“Eitherlisten to our voices or end up sidelined yourselves.”He said thefailure to punish the perpetrators of the abuse “just shows how autistic peopleare not listened to in society” and are judged only on their ability tocommunicate.He said: “Ifwe can’t communicate, we are ignored, not listened to, and abuse isoverlooked.” EmmaDalmayne, chief executive of Autistic Inclusive Meets, who organised the protest, said: “TheNAS by and large is recognised by the autistic community as being for parentsand children. “In order tomove forward from this, I believe autistic people need to become more involved.“They alsoneed to start supporting the hordes of adults out of work who need an advocate.”Dalmayne calledfor a “proper inquiry” into what happened at Mendip House.And she saidNAS should offer compensation to the former residents of Mendip House who wereabused, and that it was “appalling” that none had been offered so far.She said: “Moneycannot erase the memories or degradation. It can however go towards future careand necessities for the residents and their families.”JulianMorgan, an AIM director and a committee member of AutisticUK, said: “NAS aresaying they want to move forward from this but part of moving forward ischanging your culture.“We haveseen no sign that there is any intention to change their culture.“They don’twork with autistic advocates, they don’t work with autistic groups, they don’tsupport them.”He said thecharity had not admitted that anything happened at Mendip House until it was forcedto do so.Morgan saidtheir concerns were not about many of the people who worked for NAS, who were“hard-working and conscientious and care about what they do”, but seniorexecutives in “what has become a rather bloated organisation”.He said NAShad been concerned only with its image after it found out about the abuse atMendip House, which he said was “objectionable and abhorrent”.And hecalled for senior executives responsible for failing to stop the abuse to be“stripped out” of the charity.Rebecca*, themother of one of the former residents of Mendip House, said NAS had downplayedthe seriousness of the abuse at the homes when she and her husband were firsttold about it in the summer of 2016.She told DNS:“We were told it wasn’t serious, it wasn’t sexual, it wasn’t physical and ithad been dealt with and people had been suspended.”It wasn’tuntil they saw the safeguarding adults review in January 2018 that theyrealised the seriousness of what had happened, she said.The reportdetailed how staff had thrown cake at service-users and taunted them with food,while one resident was sent to his room because he refused to eat an onion,another was made to crawl on the floor on all fours, medication went missing,and one resident was said to be “known to flinch in the presence of particularemployees”.Newspaper reports also suggest that one resident was“slapped, forced to eat chillies and repeatedly thrown into a swimming pool”.CQC decidedearlier this month not to prosecute the charity, and instead fined it just£4,000 for financial abuse by staff, despite the regime of “taunting, mistreatmentand humiliation of residents”.Rebecca saidshe was angry that the perpetrators of the abuse had avoided prosecution and hadbeen able to “move on with their lives”.And she saidthe way the charity had dealt with the abuse had been “shocking”.She said: “Iam still so angry. They absolutely failed our kids. We have had, ‘We are reallysorry,’ but sorry comes cheap.”Her daughterwas a resident at Mendip House for 22 years, until she left after the abuse wasuncovered.Rebecca saidthere were concerns about safety standards in the home “right from thebeginning” because her daughter has been injured several times by a“challenging” fellow resident, on one occasion having to be admitted tohospital.She said:“We weren’t told about it until he had hurt her three times.”One of thethings she and her husband want to see for disabled people in care who do nothave capacity to make their own decisions is the installation of CCTV camerasin communal areas of such homes.Rebecca’shusband said he believed NAS had taken in residents with challenging behaviouralongside others like his daughter who were vulnerable in such situationsbecause it allowed them to charge more money.He said: “Aperson like [my daughter] should be entitled to be not afraid of the peoplethey are living with.”Rebeccasaid: “It was a whole system failure. Everybody has failed us: the CQC, thepolice, the commissioners who paid for it, and mostly the NAS.”Sarah*,whose brother was a resident of Mendip House for more than 40 years, said shetoo had been told by the charity in the summer of 2016 that the concerns werejust over “laddish” behaviour and “horseplay and high jinks” by young malemembers of staff.But shelater found out that her brother had “gone through this terrible ordeal”.She was toldthe abuse only took place over a year-and-a-half, but she believes he was beingabused for far longer than that.She said: “Iam looking back through those years when he said, ‘I don’t want to go back toSomerset Court [Mendip House was one of seven NAS facilities on the SomersetCourt site].’“He wouldget so depressed that he had to go back to Somerset Court. It got worse andworse, particularly in the last six years.”She said herbrother was much happier now in his new home.Sarah hasspoken to one whistle-blower who says she was sacked and threatened after sheraised concerns about the abusive regime at Mendip House.She said:“What is not right is it just being swept under the carpet. For me, thewhistle-blowers and the abusers are being treated the same – they all losttheir jobs.”She alsowants to see CCTV cameras installed in such homes in the future, as well as“transparency” from service-providers like NAS.NAS repeatedits apologies for the abuse at Mendip House, and said it was “shocked to hearthat families believe there was abuse before 2014, as this is not somethingthat has come up in previous investigations. “We hopethat they will raise it with us in our subsequent correspondence so we caninvestigate. “They should,of course, also still report this to the CQC so that it can be investigated.”Aspokesperson said NAS was “profoundly sorry for the abuse and poor practice” atMendip House.He said: “Welisten to the voices of autistic people and always make sure that our work isinformed by the experiences of autistic people and their families. “And we’realways open to ideas about how we can do this more or better.”He saidautistic people work at the charity, shape its campaigns and training materialand co-present at its training and conferences, while the autistic people itsupports are “absolutely central in planning their own care and support”. He said NASwould work with any further inquiries that were launched, and would respond toany concerns from families, including on possible compensation.The spokespersonsaid that NAS had taken “immediate action” once it became aware at a nationallevel of what had happened at Mendip House in 2016, disciplining and dismissingstaff and then introducing “a range of other changes to try and make sure thatnothing like this ever happens again”.He said: “Webelieve we had and have the right people in place to implement these changesand that any resignations would not have helped the situation. “If it everbecomes apparent that we don’t have the right staff in place – at any level –then we will of course replace them with people who can continue to improve ourservices.”He said thatthe decision of Mark Lever, NAS’s chief executive, to leave the charity “doesnot have anything to do with the abuse at Mendip House”.And he saidNAS was “very sorry to hear that two of the families feel that we misled them”about the scale of the abuse in June 2016, and added: “At the time of thismeeting we did not know all the details and were also limited in what we couldsay because there was an ongoing police investigation.”He also saidit was “not true” that NAS had taken in residents with challenging behaviouralongside those who would be vulnerable living alongside them so it couldcharge more money “as each and every placement in our services has to be basedon someone’s needs and also compatibility with the other people in the service”.On the issueof CCTV cameras in communal areas, he said: “It’s obviously a complicated issue,given that we’re talking about people’s homes. “However, werecognise that this is something that all care providers need to think aboutand we are exploring how this could work while protecting people’s right toprivacy.”He said anysuch decision “must be made in consultation with the people who use… services,their families, carers and staff”.He alsodenied that any member of staff at Mendip House was sacked for being awhistleblower, which he said was “not something that we would do”.*Not their real namesA note from the editor:Please consider making a voluntary financial contribution to support the work of DNS and allow it to continue producing independent, carefully-researched news stories that focus on the lives and rights of disabled people and their user-led organisations. Please do not contribute if you cannot afford to do so, and please note that DNS is not a charity. It is run and owned by disabled journalist John Pring and has been from its launch in April 2009. Thank you for anything you can do to support the work of DNS…last_img read more

MORE and more people are taking a stand against do

first_imgMORE and more people are taking a stand against domestic violence in St Helens – by logging to a new online pledge site.Nearly 80 people have already signed the pledge – part of the ‘Let’s Tackle Domestic Violence Together’ campaign launched by St Helens Council and its Community Safety Partners.By signing the pledge, visitors are automatically entered into a draw to win a campaign t-shirt, signed by Saints star Paul Wellens, who is sponsored by the Community Safety Partnership.There have already been three winners – Helen Mason and Susie Crossman from St Helens and Sarah Robotham from Blackpool, who all won t-shirts during the campaign launch last month (June).But the campaign has been so successful that an extra, signed t-shirt is now up for grabs. To be in with a chance of winning it, simply sign the pledge by visiting www.safersthelens.org.uk/pledges by August 31 2012.Those who have already signed will be automatically entered into the new draw. The winner will be contacted by email on 1 September 2012.The new drive aims to raise awareness of domestic violence in St Helens by encouraging people to go online and sign a pledge of support to end domestic violence and abuse – against women, children and men.For more information, click here.last_img read more