Sep 062014
 

SaveILF - Cos we're not taking no for an answer

BLOG of an ILF user by Anne Pridmore

22ndAugust 2014
Awoken by Brody (one of my cocker spaniels puppies) kissing my face swiftly followed by Eben and Suzie Brodys mother. Thought I better get up and greet the day so pressed the buzzer for my PA had a quick wee then waited for my first cuppa in bed, don’t get up too early these days.
Had breakfast (in bed) and decided to have strip wash rather than a shower. Asked PA to check for pressure sores as I can easily get them can result in stay in hospital. P A assisted me to get dressed and went into bathroom for teeth hygiene all facilitated by PA. Had BIG mug of coffee and felt ready for day.

Went with PA to get vegetables for dinner and took Eben with me. Had long conversation with my choirmaster’s husband about our new season. Without ILF I would not be able follow my love of singing. Arrived home and asked PA to unlock office and fire up computer. Answered some emails then had lunch prepared by PA. Made sure my fluid levels were up as had nasty scare last week because I failed to drink enough I couldn’t go for nine hours. It is crucial to drink on the hour failure to do this will damage my kidneys. This of course does result in many trips to the toilet facilitated by PA and also the odd accident which means I have to have another shower and change of clothes. In the bad old days before ILF I remember having to dry my clothes (I had on) with a hair dryer. I also was forced into having a hysterectomy because I had very heavy periods and could not keep clean because of having only “pop ins” a few times a day. My ex husband was infertile and we were refused AID or adoption. I was still young enough to have children and this has always been a sadness. Had lunch mushrooms on toast prepared by my PA.
Need to stop now as am going to exercise three dogs up the recreation ground with my PA who will assist me and pick up the pooh!
Had pork roast cooked by PA.
Had bad night owing to pain needed turning six times. Failure to do this results in pressure sore with can lead to skin graft.

23rd August 2014
Took dogs with PA walk on canal – got wet which necessitated PA changing me – find this tiring. Decided to have a shower and hair wash etc. Remember the days when I had to rely on bath nurse once a week my day was Monday and of course every Bank Holiday falls on a Monday so that meant waiting three weeks.
In the evening I had dinner but as it was freezing decided to go to bed at 8.00 pm and play bridge on my ipad. No more not knowing when the community nurse would come at any time to suit her. This is 28 years ago and I was much younger then, even though I was the youngest on her list she often came at 7.00 pm. I am sure it was more about “power and control” rather than putting me to bed at a reasonable time. Had cup of tea and chat with PA had drugs (prescription) and settled down to good book. Another very disturbed night – having to wake my PA five times to reposition me.

25th August collect my friend from her home to go to the cinema, My PA drives for me and I can recall the days before ILF when I was imprisoned in my own home. I had absolutely no social life at all. When we got home me and my PA took my two dogs to the local recreation park. This was only possible because my PA was able to pick up the dog pooh.

26th August had to get up early to be ready for my student who I am teaching to update our website. The beauty of having ILF to fund PAs is that if I need to get up early or fancy a lie in I am able to do this. Before the ILF I was at the mercy of the home help service and had no choice or control in my life. Going back to the mid 80s when I was entirely dependent on statuary services I was controlled by whoever determined the home carers hours. I remember raging about the fact that it was impossible to visit friends or have relationships because I never knew the time people would turn up. There was a particular occasion when I met a man and invited home to stay overnight with me. I rang the social services department to ask them to cancel my visit. But they told me that was impossible so I locked the back door and stuck a notice on the door which read “NO HELP NEEDED MAN IN HOUSE”. During the afternoon I was visited by the person who operates the volunteer centre. She came to give me feedback on the IT support I had been giving to an elderly lady in my district. I had only been able to do this because my PA was able to take and collect me.

27th August Had to be up early for PA training as I am recruiting a new PA this went on until 11.00 am then I collected my friend and took her to Leicester to choose a new outfit for a wedding. Ate lunch in town then came home all with the support of my PA.

28th August Went down town with PA grocery shopping. Then made orange and chocolate cake with PA looks and tastes yummy!

30th August Had leisurely breakfast made by PA then had lunch after which my PA drove me to cinema film was mediocre. Had lovely roast cooked by PA. Both dogs up the rec with my PA – dogs had lovely time. Watched some TV then decided to have an early night, perhaps readers might think nothing unusual about this but in the old days before ILF I had no choice as to when I went to bed.

31st August Trip to Aldi to purchase the food for our holiday in two weeks. Came home PA put shopping away and we both had lunch.
Mark Williams-My ILF Photo Diary
This diary aims to show how the ILF helps me to lead an independent life in the community. Without the ILF I would be trapped in my own home with no life.

Saturday 23rd August 2014
Today I met up with two friends, one of whom I knew at school and had lunch with them in a café. This is how the ILF helps with my social life.

Collette and Mark

Thursday 28th August 2014
Today I went to an accessible climbing event where I sat on the Bristol Disability Equality Forum Stall in order to publicise the group and get more members.

Promoting the BDEF

Keep up with our new ILF Diaries page coming soon

join the facebook group or find other ways to support the campaign at the link

http://www.internaldpac.org.uk/DPACClone/2014/04/support-the-saveilf-campaign-by-using-this-twitter-or-facebook-picture/

#saveilf

Aug 192014
 

 

A second court case against the DWP on the closure of the Independent Living Fund (ILF) will take place at the Royal Courts of Justice on the 22nd and 23rd of October. It is expected to last one and half days.

There will be a vigil outside the courts from 12.30 on the 22nd to support the ILF users taking the case and to support our right to independent living as enshrined in the UN Convention on the Rights of Persons with Disabilities- article 19

Article 19: “Living independently and being included in the community”, states that “disabled people have a right to live in the community; with the support they need and can make choices like other people do”.

Please join with us to show your support!

The closure of the ILF  has obvious implications for the UK’s chances of meeting such obligations. Most importantly for those disabled people who will lose this financial support they will lose any independence and choice in their lives. You can listen to how this vicious attack will affect disabled people at these links.

http://www.dpac.uk.net/2013/02/a-nasty-cut-people-affected-by-the-closure-of-the-independent-l5142/

 

https://www.youtube.com/watch?v=OMElPk0pq6I

 

We will be posting further updates

 

Aug 152014
 

 

The campaign to save the Independent living Fund (ILF) is now at its most crucial stage, because it involves you.

 

Following the high profile Westminster Abbey sit-in and the tea parties held outside DWP offices, we’re now asking ILF recipients to invite MPs to their homes to show them exactly what the ILF means in reality and why it must be kept.

 

This Summer is a great time to lobby MPs as they’ll be back in their constituencies working hard in the hope of securing votes in the run up to the 2015 General Election.

 

Please take the simple steps in this toolkit and let us know how it goes so we can target politicians and do everything we can together to save the ILF.

 

It includes writing a letter/email to your MP, writing to the local paper, meeting your MP, arguments and briefing and an invitation for your MP to the MP Drop in on 2nd September

 

Independent Living fund Drop in

with BBC Silent Witness actress Liz Carr

2 September 2014; 2 – 4pm; House of Commons Committee Room 19

This drop in session will be a chance for MPs to find out more about the closure of the ILF which currently supports nearly 18,000 disabled people with the highest support needs to live independently in the community, to contribute to society in employment, education, volunteering, as family members, friends and as members of our communities and to build the local economy through employing teams of Personal Assistants.

 

The surgery will be an opportunity to ask questions and to speak to Liz who has been enabled, through support from the ILF, to progress an acting career that has spanned stand-up comedy, presenting for BBC and primetime television.

 

Also in attendance to answer your questions will be a former ILF staff representative and a disabled person who missed out on the ILF through its closure to new applicants in 2010 and whose experiences reflect those of many other disabled people now excluded from participating in areas of life that non-disabled people take for granted.

 

The Drop in is being organized by PCS Union, Disabled People Against Cuts and Inclusion London.

 

For more information contact ellen.clifford@inclusionlondon.co.uk or Natasha@pcs.org.uk

 

Click Save-the-ILF-mobilisation to download the full Save ILF Mobilisation Word document

 

 

 

Jul 202014
 

Rob prepared this statement for the recent Disability Rights UK conference (18th July) He was not allowed to give his statement- we publish it here so people can understand why all voices should be heard and listened to.

The Fight for Our Lives

 My name is Robert Punton I am a disabled person and an Independent Living Fund (ILF) recipient I come here today to oppose Disability Rights UK stance on the closing of the ILF.

I have been a disabled activist for over 30 years both in a paid and unpaid capacity.  The money I have received through ILF funding has in no small part enabled me to achieve this, I have employed the same two guys as my Personal Assistants Mike Orme and Darren Harrison for over 25 years and now I am employing their son Daryl Harrison-Orme in the same capacity.  If the closure goes ahead this puts our partnership (family) in serious jeopardy.

I make no bones about the fact that as a person with high support needs without this extra funding I would be languishing in a Scope home or one run by some other likeminded establishment.  In saying this I am not in anyway denigrating the lives of anyone living there but I much prefer my lifestyle and will fight to my last breathe to save it.  Make no mistake everyone using ILF is in the same boat and none of us want to sink.

I am a member of DPAC and Co Director in Community Navigator Services with Clenton Farquharson MBE and Jack Nicholas it is a Community Interest Company we all identify as disabled; we aim to build capacity within communities to allow them to participate within society to their fullest n need or want.  We all agree the closure of ILF will severely destroy the advances that disabled people that achieved in last 3 decades.

Disability Rights UK and Simon Stevens advocate that when they close ILF it will make it a level plain field when they pass on funds to local authorities and everyone will be treated equally, equality only works when you use the highest possible denominator, in other words no one wants to be treated like their neighbour if they are being treated badly.  The term we like to use now is fighting for social justice for all, hence wanting the best standard of living (in this case support plans) for everyone.

Simon Stevens and his supports say that the ILF has made users of their scheme elitists in their communities.  I can’t argue that this may be perceived in that light. However, I would argue this two-tier system in society cannot be blamed on the independent living fund or its users; it was the Conservative government who closed the ILF in 2010 under the guidance of Maria (Killer) Miller, and in doing so cut off thousands of possible or probable new users of ILF, Con-Demning them to the level of substandard support given by most Local Authorities.

This substandard support shows the priority most local governments, and therefore National Government accord to people requiring high support – they are more than willing to leaving wallowing in our own shit!

Anyone following the campaign to SAVE the ILF led by DPAC and Inclusion London must know that we the major goal is to reopen the ILF to all people who fit their criteria.  In doing so raising the standard of those people’s support.  We believe this is the only solution not butchering the funding  of the so called “lucky” ones it in all honesty won’t help anyone.

I would love to know where the advocates of this Don’t Save ILF think the monies to raise everyone’ standards of support will come from. The money release from ILF we be swallowed up by incompetent politicians looking after their powerful votes, not us the people they view as worth less. In Authorities like Birmingham who have amassed debts of £600m you think the money given up by ILF will not even make a drip in their ocean of debt.

While I disagree with Simon’s argument I support his right to voice his opinion.  However, it is an understatement to say I am flabbergasted to hear Disability Rights UK supports this argument.  I thought you represented disabled people not the establishment!

What really exasperates me though is that we never learn from our mistakes.  Once more we are doing the governments work for them fighting between ourselves while they sit back laughing at us.  We must stop fighting and work together to defeat the Con-Dem coalition

I will finish with message to the camp supporting shut ILF.  If you can’t support don’t fight us.

Today we fight for our lives, if we lose today there will be no Tomorrow just an eternity of marginalisation and isolation either trapped our own homes or corralled in Care(less) Homes run by unscrupulous privateers only interested in profit not people

 

Thank you for listening  I hope you hear me!

 

see also: http://www.internaldpac.org.uk/DPACClone/2014/07/disability-rights-uk-independent-living-or-new-visions-in-neo-liberalism/

 

Jul 172014
 

DPAC have had an odd kind of non-relationship with DRUK. We’ve disagreed about many things. For example, DPAC is for saving ILF, DRUK’s Sue Bott suggests this is something we should probably forget about, and that ‘Whilst the ILF has benefited many disabled people, claims that it has been at the forefront of independent living are a little exaggerated’[1]. This is not the view of ILF users. See their stories, their lives, their experiences  It is amazing that anyone can believe that passing ILF to local authorities who already say that without ring-fenced funding many ILF users will lose support and/or be institutionalised is something we need to accept while we all get together to talk about ‘new visions’.

 

The DRUK conference dedicated to a ‘new vision’ for independent living is also a confusing affair, not only are they embracing Simon Steven’s approach[2] ( He who accused DPAC of murdering disabled people and was dropped from Leonard Cheshire’s sponsor program because of his outright abuse to other disabled people[3]), but one of their advertised partners for this conference are Craegmoor .

 

Craegmoor are part of the Priory Group owned by Avent International which is a US Equity Company- changing times you may say-and you’re right. Maybe that’s what these new visions are about: capitalising on the market, private equity companies taking public money, and disability organisations getting in on the act- maybe neo-liberalism rather than disabled peoples’ rights and equality now make up ‘new visions’ of independent living

 

Craegmoor ‘s target market are those labelled with autism, learning difficulties and mental health issues. They take 85% of their funds from public funds[4]. Craegmoor’s  web site boasts of its residential homes:

We provide understanding and support for people with learning disabilities, autism and mental health problems in a variety of settings based on the individual’s abilities and needs. Our nationwide residential care services support people to develop the skills they need to live as independently as possible’.

 

Wait, since when were residential homes part of independent living? Weren’t these the very oppressions that early activists fought to get out of, and current activists (and ILF users) are fighting to stay out of?

 

Their brochure[5] goes further:

Craegmoor is part of the Priory Group of Companies. From education to hospitals, care homes and secure facilities, the Priory Group of Companies offers individually tailored, multidisciplinary treatment programmes for those with complex educational needs or requiring acute, long-term and respite mental healthcare’.

 

Treatment programs? Not sounding very independent living or social model. As well as residential homes, secure ‘hospitals’ and segregated schools. It all sounds very daunting.

 

But there’s much more on the Priory group of companies too which is even less palatable concerning cover-ups and abuse. Until July 2013 Phillip Scott was Chief Executive if the name isnt familiar, he was also the Chief Executive for Southern Cross. Itself a subject of inquiry on institutional abuse and 19 unexplained deaths[6] Craegmor say they transform lives, but in what way?

 

In May 2013 there was Melling Acres, ‘where inspectors reported major concerns about the care and welfare of its seven residents – care plans were poor, with scant information about physical health needs, there were limited activities and a lack of advocacy to enable people to express concerns about their care’. In September 2012 ‘following an anonymous tip, inspectors found residents at risk of abuse in Lammas Lodge, a home for young adults. There were not enough staff and what staff there were, inspectors found, were not properly trained to meet residents’ complex needs. There were six major areas of concern, including care and welfare, medication and safeguarding. The home, which was warned it must improve or face closure, has since been given a clean bill of health by the regulators’. Both homes were registered under Parkcare Homes’ so neither Priory or Craegmoor got the fall-out despite ownership[7].

 

This was not the case in 2012 when concerned relatives hid CCTV cameras in the room of Highbank hospital in Bury Manchester to reveal abuse by staff[8], not so with the Bentley Court home in Wolverhampton suspended by the council for what it called ‘safeguarding issues’ in 2010, a council that stopped sending those with dementia to Bentley Court[9], and not so in 2012 when what was described as the ‘Priory mental hospital’ in Windes on Bennet Lane was closed due to not meeting 10 standards of Government quality and safety including: Patients not being fully protected from the risk of abuse and their privacy, dignity and independence not being respected, staff not receiving necessary training, a lack of systems to assess and monitor the quality of the service provided, care plans did not always cover patients’ needs. There were also reports of patients attempting to escape during supervised visits into Widnes town centre[10].

 

So as said definitely NOT independent living.

 

In 2004 the then CEO of the Priory group Chai Patel said ‘My view is, if there is ever a conflict that involves choosing between care and profit, then we should not be involved in that environment,’[11] Given the examples above it seems profit is the defining factor.

 

It didn’t take long to find this information, it didn’t take long to realise that these are not the partners who should be with any organisation claiming to support independent living, even ‘new visions’. So maybe the question that needs to be asked is what exactly do DRUK support?

 

There are a few clues, in a recent blog piece by DRUK (dated 16th July) mentioning a very good Guardian piece by independent living activist John Evans[12], an ILF user, the last paragraph says: ‘Sue Bott, Director of Policy and Development at Disability Rights UK, has written a new blog which also discusses the role of the ILF but proposes that disabled people should concentrate their campaigning towards achieving a single integrated system that assesses people’s needs and allocates assistance and support based on the outcomes people could achieve in their communities and contribute to society’.

 

John Evans says everything we need to know-we have a vision for independent living and we already have a model forged by international independent living activists. There is nothing wrong with that model. There is no reason to stop fighting for it, abandon it or develop ‘visions’ or hallucinations of lesser systems in which we divide disabled people by perceived contributions to society-all disabled people are of value, all deserve to be supported. It is the ILF model that needs to be built upon and expanded to all-something that promotes real independent living.

 

The fact that a so-called user led organisation is putting forward anything different with the spectra of institutionalisation added to the mix is a tragic condemnation of all that disability activists have ever worked and fought for. We are appalled that DRUK are willing to sacrifice disabled people’s futures in this way and sadly can only assume this is to ensure on-going funding from the government.

follow @dis_ppl_protest for more

If you want to email DRUK you can do so by emailing:  liz.sayce@disabilityrightsuk.org

 

[1] http://disabilityrightsuk.blogspot.co.uk/2014/07/we-need-new-vision-for-independent.html

[2] http://disabilityrightsuk.blogspot.co.uk/2014/07/we-need-new-vision-for-independent.html

 

[3] http://davidg-flatout.blogspot.co.uk/2014/07/inclusion-forgotten-ambition-lost-i.html?spref=tw

[4] http://www.craegmoor.co.uk/library/files/Craegmoor%20Locations%20&%20Services%20Brochure(1).pdf

[5] http://www.craegmoor.co.uk/library/files/Craegmoor%20Locations%20&%20Services%20Brochure(1).pdf

[6] http://www.bbc.co.uk/news/uk-24581693

[7] http://beastrabban.wordpress.com/2013/07/20/private-eye-on-failure-of-care-at-more-care-hospitals-owned-by-american-private-equity-firms/

 

[8] http://www.dailymail.co.uk/news/article-2227229/Nurses-quizzed-police-abusing-patient-Priory-Hospital-concerned-family-hid-secret-camera-room.html

 

[9] http://www.expressandstar.com/news/2010/01/15/elderly-will-no-longer-be-sent-to-care-home/

 

[10] http://www.runcornandwidnesweeklynews.co.uk/news/health/failed-priory-mental-hospital-widnes-5875608

 

[11] http://www.managementtoday.co.uk/news/432103/Man-Priory/?DCMP=ILC-SEARCH

 

[12] http://www.theguardian.com/society/2014/jul/16/independent-living-fund-closure-disabled-people-residential-care

Jun 282014
 

The leadership of the Church of England showed themselves to have the morals of sewer rats today after hundreds of police were drafted in to prevent a peaceful protest by disabled campaigners.

westminister2download westminsterabbey-protest2

A protest was taking place in the grounds of Westminster Abbey, where Disabled People Against Cuts, backed by Occupy and UK Uncut, intended to establish a camp for independent living to highlight the shameful decision by the current Government to close the Independent Living Fund (ILF).  Whilst many people were able to enter the grounds of the Abbey, with several disabled activists taking control of the gates, they were soon joined by hundreds of police.

Whilst the protest was being established a letter was presented to the church explaining the reason for the disruption.  This was completely ignored by the Dean of Westminster, John Hall, who instead of meeting with the protesters, or even giving a statement, cowered inside and allowed the police to carry out his dirty work.  At the time I left two people had been arrested, for reasons which are currently unclear.  Over 200 police kettled the 60 or so protesters, which included many severely disabled people who use the ILF themselves.  Police refused to allow any food or drink for those inside the Abbey grounds, and even prevented a severely disabled person’s personal assistant from entering the kettle.

At one point, so desperate were the police to arrest someone for nothing,  they charged into the crowd causing people to fall onto several wheelchair users.  Such was the sudden aggression of police it is a miracle no-one was severely injured although unconfirmed reports suggest one disabled person did have to receive treatment after this assault.  Police also attempted to remove access ramps for wheelchairs users to prevent them from being able to peacefully protest in the Abbey grounds.  Equipment was damaged and police prevented the planned disabled toilet and other infra-structures to be created which would have led to a safe event.  Throughout the afternoon all those inside the grounds remained at risk of violent arrest, and in fact, as you read this, that might be happening.

The protest was held on private property, meaning that the church leadership were happy for all of this to take place.  At any point the Dean of Westminster could have ordered police to stand down, yet he chose to allow this abuse to continue unchecked throughout  the afternoon.  Hundreds of people contacted him on twitter demanding the protest be allowed to continue without this police harassment.  The Dean ignored all of them.

Throughout the afternoon all attempts at negotiation with the church leadership were rebuffed.  Instead the Dean of Westminster let the boots and fists of the ever willing London Met do his talking for him.

Whilst no-one expects anything less from the police, who have a history of attacking and injuring disabled protesters, the action, or inaction of the church leadership is a fucking disgrace.  The Dean of Westminster would rather disabled people are abused, kettled, assaulted and kept without food or water than allow a creative protest against vicious cuts which are likely to lead to some people being forced to live in institutions.

The latest news is that those inside the Abbey grounds are currently meeting to decide what to do next.  With no word from the Church then staying could mean mass arrests in the ground of the Abbey.  Whatever the occupiers decide you can show support by telling Westminster Abbey @wabbey and the Dean of Westminster @deanwestminster exactly what you think.  After today’s shameful behaviour he must be hoping that the existence of hell really is just something liars use to scare children with.

 

Then come and join next Friday’s Independence Day demonstration outside the DWP and make it the biggest protest yet to show that no-one is going to be frightened away from fighting to save the ILF.

For the latest news follow @Dis_PPL_Protest on twitter or visit their website at:  http://www.internaldpac.org.uk/DPACClone/

Read the statement from DPAC on the reason for the protest:http://www.independentliving-fightback.uk/online/

Follow me on twitter @johnnyvoid

 

Reposted from Johnny Void with thanks the protesters had no option but to leave the site-more soon-many thanks to the Abbey for protecting their interests and their income from tourists, over arguing in solidarity for justice for disabled people #saveilf  

Jun 192014
 

The ILF has transformed People’s lives.  The Independent Living Fund does what it says on the tin – it liberates people who wouldn’t otherwise be able to, to live independently.  It lets them make choices about how they live – things we often take for granted: when to get up or go to bed, what and when to eat.  It allows them to work, to be active in the community and to live in their own homes.

 

I challenge the Minister today to guarantee that those currently in receipt of ILF won’t become less independent as a result of his decision to close it in June 2015. Because that’s what people fear.  That’s what they are frightened of.  They fear losing their jobs, losing those staff they employ to support them and losing their independence.  They fear being forced out of their homes and into institutions.

 

The Minister may say he’s passing the monies and responsibility to Local Authorities but this will not ease their fear.  And he is rather naïve if he thinks that absolves him from his responsibilities for this decision.  I’m afraid he can’t get away with devolving responsibility and blame for the consequences of his decision to others.  That’s why I ask him for these guarantees today.  For a start Disabled People Against Cuts calculate the current annual cost of support at around £288 million yet the government only identified £262 million to transfer to local authorities.   And it gives no reassurances that this money will be ring fenced to be spent only on supporting disabled people to live independently rather than absorbed into broader council budgets.

 

According to SCOPE £2.68 billion has been cut from adult social care budgets in the last 3 years alone, equating to 20 per cent of net spending.  This is happening at a time when the numbers of working-age disabled people needing care is projected to rise by 9.2% from 2010 to 2020.  In a recent survey 40% of disabled people reported that social care services already fail to meet their basic needs like washing, dressing or getting out of the house.  And 47% of respondents said that the services they receive do not enable them to take part in community life.

 

So it’s not surprising that people are desperately worried about their future.

The worry is that continued underfunding of social care will mean the care system will simply not be able to support disabled people to live independently.  The lack of reference to ‘independent living’ under the definition of the ‘well-being principle’ in the Care Bill which local authorities will need to take into account when providing care further fuels this anxiety.

 

And it’s not just people in receipt of ILF who are worried – it’s their friends, their carers and their families too.  The cases of two of my constituents illustrate this well.

 

 

Ashley Harrison is a Scunthorpe United fan like me cheering on the Iron at Glanford Park. At 10 months old he was diagnosed with cerebral palsy.  He will turn 30 this year.  Ashley has lived in his own bungalow since 2006.  The ILF allows him to employ his own team of carers.  Ashley is an inspirational man, a fighter but he is worried that the control over his future is being taken away from him.

 

His mother says:

 

‘The closure of the ILF would be nothing less than devastating for us as a family. Since Ashley was awarded his ILF allowance the whole family’s lives have changed for the better. ILF understands Ashley’s needs and always do everything they can to constantly improve Ashley’s life and enable him to live independently.

As a family naturally all we have ever wanted is the best for Ashley, which the ILF has helped us achieve. The ILF has always seemed to be the leading and positive force at meetings ensuring that social services match and meet Ashley’s needs. Without the ILF we all face a very uncertain future. The uncertainty that Ashley faced in his early years prior to receiving his ILF award have been daunting, frustrating and of course a constant battle with social services.

The alleged “smooth transfer” over to social services is already proving to be nothing of the sort.  Each and every meeting we hold (which are incredibly frequent) leave us having to justify Ashley’s needs as a disabled person.  The assessments they ask us to complete are totally unsuitable for the severely disabled.

All of the disabled people living independently with the help of ILF are living their lives to the full. The fear is that if ILF closes these people will lose their human rights and dignity to live their lives as they should.

As a mother who’s fought the last 30 years for Ashley to have the life he wants and of course deserves, I dread to think what the next generation of disabled people will have to endure without the positive support of the ILF.

I beg you to listen to myself as a mother of a disabled son and also listen to all those disabled voices who deserve to be heard.

Give each and every person the ability to live and achieve their dreams just as you and I can.

The Paralympics just proves how amazing disabled people can be!!!’

 

 

Jon Clayton is also in receipt of ILF.  Like Ashley he has carers whom he employs who understand his disability.  His sister writes

 

‘My brother Jon is quadriplegic having been involved in an accident which was not his fault at the age of 18. He is now 54. 

He is one of life’s truly inspirational people; an accomplished mouth artist – a gift he only knew he had after his life changing accident-  living independently in his own home. He freely gives his time mentoring other disabled persons, helping them come to terms with another life. A life without limbs. A life without walking.


He has always sought to live as normal a life as possible. Having gone through marriage, divorce, being a step father, losing a partner.

He is both ordinary and extraordinary.

He relies heavily on his full time carers. Carers who he personally has ensured are trained to an appropriate and exceptional level to look after a person with specific and defined needs. One false move and he could (and has) spent 18 months bed bound with a pressure sore at the expense of some ill trained nurse.


His carers are trusted to ensure and give a high level of care, entrusted with the most personal of tasks from catheter changing, toileting, dressing etc.  This has been part of Jon’s life since his accident. Something he has taken on with humour and dignity.

If the ILF is removed Jon will be unable to live independently. Being able to engage in what you and I would consider a normal life. He will be unable to travel, have holidays, visit family, visit friends. 

The ILF has enabled independence. Given life, where life seemed over.

I would therefore urge you to do all you can to prevent this life enabling function – the ILF – from being eroded’

 

A fundamental concern for Jon, Ashley and others is whether they will be able to employ their specialist staff in the future.  North Lincolnshire Council’s responded to this question on 9th June 2014:

 

‘We appreciate this situation may cause you concern as an existing Independent Living Fund customer and would wish to reduce any worry or anxiety you may have.

 

Allocation of future monies will be based on your updated assessment and support plan and on future Local Authority funding so at this stage we cannot give any specific guidance on the amount of monies that you may receive from us or cannot give guarantees on the future employment status of any Personal Assistants you may currently employ.’

 

As you can imagine such ‘reassurance’ only serves to heighten anxieties and build mistrust!

 

So I return to my central question – will the government guarantee that Ashley Jon and all those currently in receipt of ILF will not lose their independence as a result of their decision to close it.  A decision I believe is aimed at saving money but might end up costing more in other budget areas such as health.  A better way forward would be for government to engage with ILF recipients learn from their experience and find ways of shaping future services that are cost effective but continue to deliver true independence.

 

As Disabled People Against Cuts points out for the 17,500 people in receipt of ILF ‘the closure of the Fund will have a devastating impact on the lives on these individuals and their families.  It also has a much wider significance because at the heart of this is the fundamental question of disabled people’s place in society: do we want a society that keeps its disabled citizens out of sight, prisoners in their own homes or locked away in institutions, surviving not living or do we want a society that enables disabled people to participate, contribute and enjoy the opportunities, choice and control that non-disabled people take for granted?’

Or in Mahatma Ghandi’s words “A nation’s greatness is measured by how it treats its weakest members.”

 

People like Jon and Ashley are not weak but strong.  The ILF gives them independence and liberates their strengths. Now is the opportunity for the Minister to guarantee their future independence will not be compromised by the closure of the ILF.

 

http://www.nicdakin.com/ilfspeech.html

 

DPAC would like to thank Nic and all the supportive MPs at the adjournment debate on ILF on 18th June 2014

 

See the ILF debate at: http://www.bbc.co.uk/democracylive/house-of-commons-27884690

 

 

May 012014
 

Save the Independent Living Fund
“Nursing Homes Stink, They’re Worse than You Think.
We’d Rather Go to Jail Than Die in a Nursing Home”

jailnursing home ilf

Join us to protest against the closure of ILF on Monday, May 12th 3pm-5pm outside DWP head quarters, Caxton House, Tothill Street, SW1H 9WA.

Nearest accessible tube –Westminster.

Click for Face Book Event Page

Bring things to make lots of noise. We have asked Mike Penning Minister for disabled people to join us but in case he doesn’t we need to make sure he knows we’re there.
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Dear Mike Penning,
We understand that you have stated publicly that you feel closure of the Independent Living Fund (ILF) will not have any adverse effect on the ability of disabled people to live independently in the community, to be able to access education or to continue to be employed.

Disabled people who are ILF recipients do not agree with your view and are gathering to voice their fears for their futures on May 12th from 3-5pm outside Caxton House.

They would very much appreciate the opportunity to speak to you about their very valid concerns so although we know you must be a very busy person we hope you can join us to hear what disabled people are saying.

In the meantime we are attaching a small selection of case studies for your attention.

On behalf of DPAC ILF recipient support group
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What is the Independent Living Fund?
The Independent Living Fund (ILF) is a ring-fenced pot of funding to provide funding to help 18,000 disabled people with high support needs live an independent life in the community rather than in residential care.

Closure of ILF: In March 2014 government decided to close the ILF in June 2015 in spite of a court ruling that said their previous decision to close ILF was in breach of the Equality Act. As usual DWP blatantly ignored the court.

Recommendations: Deaf and disabled people’s organisations and disabled people believe the ILF should be kept open and re-opened to new applicants for two key reasons:
– The ILF is a cost effective model of funding that successfully supports the independent living of those with the highest support needs.
– In stark contrast many Local Authorities only provide funding for basic a clean and feed model of care which ends independent living and inclusion in the community. This will leave many ILF users with a choice between inadequate care at home or an inactive, isolated life in a residential home.

 

 

 

 

 

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