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.
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