As we begin a new year we tend to look forward rather than backward, make new resolutions to break old habits and generally hope that this year will be better than the last. Some people will have had a wonderful year, some just average and some will have had an awful one. Life’s like that, as we all have our ‘ups’ and ‘downs’. Anyway, welcome to 2006. I would also like to take this opportunity to wish all our members and supporters a happy, healthy and successful New Year.

At the end of last year the committee made a resolution that CILK would have its own newsletter. Well here it is… I do hope you find it interesting and informative and that many of you will be motivated to put pen to paper and send in articles and stories.

Everything today seems to be about ‘inclusion’ for all our citizens, and that should include disabled people. We all want to see a fully inclusive society, but many barriers still need to be removed if that goal is to become a reality for disabled people. The Social Model approach must be at the forefront of the inclusive agenda.

Disabled people themselves created the Social Model of Disability, and this positive approach to disability establishes that everyone is equal and demonstrates that society erects barriers that prevent participation and restricts opportunities. Removing those barriers whether they are physical, organisational or attitudinal is fundamental for disabled people to live full and independent lives in an inclusive society

Manchester City Council adopted the Social Model of Disability in 1991, and many other enlightened Councils have also embraced this positive approach to ‘disability’. Kent County Council has just adopted this model, of course, adopting the social model is one thing, but removing the barriers to independent living, is another.

For far too long, many disabled people have had to take prescriptive services decided on their behalf by non-disabled people, who fail in many cases to understand our individual needs. We are often seen by them as weak vulnerable people who need to be ‘cared for’… as we cannot do anything for ourselves, but as many of us know when disabled people have access to the right equipment, assistance and support they can make a real contribution to society and lead full and active lives.

We all need to campaign for positive change within KCC to implement inclusive, independent living for disabled people. Individual support and assistance packages which give back individual choice and control to disabled people should be made available to all those disabled people legally entitled to receive them and who are willing to operate them.

Barriers to Direct Payments           Back to contents

Direct Payments is the system where individuals are given the money to choose and pay for their own support and assistance requirements ‘care’. There are 20,000 people who use direct payments according to government statistics. In Kent, we have over 580 people using this liberating option.

Many disabled people are being denied the opportunity to take control of their own lives through choosing their own care package because of a failure to properly implement the direct payment policy. Kent has twelve care management teams who all interpret the policy differently; many believe that direct payments are their ‘gift’ to a disabled person. They are not. Some staff do not even understand the principals of true independent living from the disabled person’s perspective! These are the main barriers stopping people from getting hold of direct payment money to choose their own support and assistance requirements. Other barriers stopping people from getting the choice and money through direct payments are:

• Lack of clear information
• Inconsistencies in local practice
• Poor staff awareness of the option of direct payments
• Unnecessary and over-bureaucratic paperwork
• Patronising or restrictive attitudes towards some disabled people who would like to use direct payments
• Unwillingness to devolve power from professionals to individuals
• Lack of advocacy and peer support
• An independent, impartial direct payment support scheme which is run, controlled and managed by disabled people

Choice and control… with Direct Payments 

Direct payments are intended to give disabled people more power and control over their support arrangements and, ultimately, over their lives. User-led support organisations will benefit from working within the social model of disability in order to successfully challenge established power relationships.

It is also worth remembering that direct payments are an innovative idea that originated with disabled people themselves back in the early nineties. DP’s are a tool for purchasing personal assistance by disabled people. It’s a tool used by personal assistance users as part of a process towards establishing control, and freedom, that puts disabled people in the driving seat of their own support and assistance requirements. Giving them the choice and control over those decisions.

Employing your own PA gives you the choice, control, and an independent life and also lets other family members have a life too.

Independence - a personal view by Clive Lever            Back to contents

I was brought up by parents who had opposing views on my right to independence as a blind person. On the one hand my mother took the view that blind was a word you didn't’t mention. She would say to her friends in a hushed voice: “My boy has got bad sight you know”, as if it were something socially unacceptable like halitosis. “He likes to be independent” was her way of calling me darned obstinate. She was opposed to me doing anything for myself if she could do it for me.

My father on the other hand, taught himself Braille so that I wouldn't’t have to ask the sighted teachers to read out confidential letters to me. We had to campaign for every inch of independence I achieved when growing up. So, with my father’s help, I learned to get around town and do my own shopping.

In 1981, I finally trained as a computer programmer and I left my home in Somerset, to take a job in Kent. In spite of my mother’s protective nature, I had become the first person in my family to be educated to A level standard, and the only one among my siblings to leave my home town. On leaving home, I had to take lessons to teach me to cook for myself and do housework. In the last ten years, I have married, divorced, married again, made a career change from computer programming to equality and diversity, produced a comedy album that succeeded, put on a spin-off live concert that failed, holidayed in Europe, Canada and America, seen Graceland and played the Blues in its birthplace, Beale Street, Memphis.

Computers have helped me achieve independence in many ways. They enable me to hold down a good job, read newspaper articles on publication day, correspond with sighted and blind people all over the world without knowing or caring which is which and arrange to book my own holidays. There have been ups and downs, but I firmly believe that a disabled person, like any other, has the right to lead their own life.

Sometimes we will triumph brilliantly; sometimes we will make monumentally foolish mistakes. This is no different from the life experiences of non-disabled people, but our triumphs and disasters are ours, and we have the right to own them. In the words of the song, I did it my way. If I had led the passive life my mother viewed for me, rather than the independent life my father had the foresight to envisage, I would have missed out on many experiences most of my non-disabled family members could only dream of. If you don’t join in the game, you can’t lose it, but then again, you’ll never win either. Independence means being a player in your own life game, not a spectator.

I am only glad that my father’s approach, to encourage me to gain the independence he assumed I was entitled to, just like the rest of his children, was the right one. Life has been full of risks as a result of it, but then that’s what life is all about.

Article published with kind permission of Independence & Access Matters (01233 721718). Independent Access Group covering KCC area.

Independent Living Advocacy           Back to contents

Getting support from someone who really understands the barriers disabled people face is absolutely crucial if the support package is going to be genuinely empowering. Peer-based support is the most effective way of doing this - that is, support from other disabled people with the appropriate training and experience, and who are independent of the funding bodies. Feedback and evaluation from existing support organisations bears this out.

Getting independent support when it is needed is also vital. A support worker should meet with a person who is interested in Independent Living to explore the options well before a community care assessment takes place (i.e. self-assessment). This means that when they do have an assessment they are properly prepared. They know what they want from a support package and are able to make informed choices. Direct payments work most effectively when the prospective employer has had an opportunity to fully explore all options.

It is not the role of the support worker to advise, manage, and recruit PAs or other workers. This is the employer's role. Likewise in situations of conflict between employer and employee it may be advisable to encourage the employer to seek legal advice beyond the skill/ knowledge of the support worker, though the training, advice and support should help to avoid such situations from arising.

In Brief           Back to contents

Independence Technology                     

A recent press release by Independence Technology announced that they are pulling out of the UK. The sale of the I-Glide ceased last year. Owners of the I-Bot Mobility System and I-Glides will continue to receive customer service, although no new buyers will be able to purchase these products.

Companies Merge

The merger at the end of last year of Lomax Mobility and Sunrise Medical has led CILK to question what impact this will have on disabled people. The companies will continue to operate independently, but will disabled people see better quality and value for money?

Chip and PIN Credit Card Payments

From 14th February (Valentines Day) it will be generally necessary to use a PIN number when using your credit or debit card to make ‘face-to-face’ payments. Disabled people who will have difficulty with this can obtain a Chip & Signature card from their bank.

Mobility Roadshow 2006            Back to contents

This year’s show will take place at Kemble Airfield near Swindon on the 8th, 9th & 10th of June. Admission is free and there will be over 200 stands. Last years show at Donnington Park attracted some 17,000 visitors. Additionally, Mobility Roadshow Scotland will be returning to the Royal Highland Centre near Edinburgh on the 5th and 6th of April.

For more details call 0845 241 0390 or visit the Mobility Roadshow Website at:
www.mobilityroadshow.co.uk

The new Wembley Stadium            Back to contents

The new 90,000-seater stadium will have 310 places for wheelchair users and the same number for companions. One hundred wider spaced seats have also been allocated for those spectators taking working dogs to events and for those visitors who are semi-ambulant.

There are no obstructed views of the pitch and there will be good sight lines for wheelchair users, even when spectators are standing. Provision has also been made for 250 accessible parking spaces at a site adjacent to Blue Badge holders and will need to be booked in advance. Access from the car parks and agreed drop off points will be stewarded, and assistance will be provided where there is no companion in attendance.

There will be pass gates at every set of turnstiles for wheelchair users, semi-ambulant visitors and those accompanied by working dogs. There are dedicated, accessible lifts inside the stadium, sized for two wheelchair users and companions.

The new stadium should be open in March and be ready to host the FA Cup final in May.

The difference between ‘Disability’ and ‘Impairment’              Back to contents

You could be excused for wondering why we use two different words for, what many people might consider, a common meaning.

In reality, the words ‘disability’ and ‘impairment’ have very different meanings.

As a disabled person, my impairment is the medical condition, (The diagnosis that was given at the outset). Many people, mistakenly, call this my ‘disability’.

My disability is the physical, organisational and attitudinal barriers that society puts in my way; Without these barriers, (in spite of my impairments), I would not be disabled – I could live my life as fully as any non-disabled person; Pursue a career, social life, etc.

My ‘disability’, (The barriers), is a public matter that can only be dealt with by all of society – My impairments, on the other hand, are my own private business, which I can share with or withhold from anyone whom I choose.

Sue Elsgood and Sammi Strong - Greenwich Association of Disabled People and E4E (Disability Equality Trainers.

RADAR Holiday Guide 2006             Back to contents

If you are looking… for accessible holiday accommodation or facilities anywhere in Britain or Ireland, RADAR’s new 2006 Holiday Guide is for you.

It includes contact details for a wide range of organisations offering services and advice to disabled people. This year’s guide includes more information than ever. The new entries include self catering accommodation on the south coast, barn conversions in the north Pennines, a village inn in Northern Ireland, holiday parks in the West of England, a touring site on the banks of the Thames and both full and limited service hotels in city centres and on the approach to large towns.

Other additions of note include a couple of companies with campervans for hire that have been designed for wheelchair users and a new organisation offering holidays abroad for visually impaired people.
The holiday in Britain & Ireland 2006 guide is available from RADAR price £10.00 plus p&p.

Telephone Number: 020 7250 3222. Website: www.radar.org.uK

Maintaining Independence            Back to contents

Hi, I’m Allen and I would like to tell you how Direct Payments have enabled me to maintain my independence. Prior to using direct payments I had built my independence around the right aids and equipment for daily living. Around two years ago my wife was experiencing health problem and was unable to provide me with any help. I was also dealing with the deterioration of my muscle wasting impairment that made me acutely aware that ‘aids and equipment’ could no longer solve my personal support needs. I then managed to persuade family and friends to help me out; this worked satisfactory for a while, but was not very flexible for my independent lifestyle and me.

I knew quite a lot about direct payments from my own research, from relatives in other parts of the country and friends in London and other areas who told me about their positive experience of using direct payments. They explained the pros and cons of direct payments, the assessment procedure, and how I could employ my own personal assistants to provide me with the type of support and assistance that I required. I also spoke to the district manager of my local care management team about applying for direct payments.

In early June my support/assistance requirements were becoming difficult to arrange. In July arranging my support became very difficult with two people on holiday and only one person being available for the next month. I knew then, that I would have to take action or the situation would deteriorate even further. So I followed the advice given to me by experienced direct payments recipients and did my own self-assessment on my ‘care’ requirements. I wrote down a typical day in the life of; making sure that I recorded all of my support and assistance needs from getting up in the morning to going to bed at night. This equated to 60 hours a week, which frightened the life out of me.

I was getting angry and frustrated with the situation I found myself in and decided to ‘go for broke’. I then called the KCC duty system in early August to ask for an assessment for Direct Payments and was informed that someone would contact me within 21 days.

I felt fairly confident that I would be able to get a direct payment, so I started to identify people who would like to work for me as a personal assistant and I also opened a separate bank account at my local Nationwide. On the twenty-first day of August I had the phone call from the duty team who asked a few questions and was told my enquiry would be passed to the care management team in my area.

In early September my assessment took place, I went through my typical day with the care manager that resulted with a ‘care package’ of 47 hours a week. ‘Independence Day’ dawned for me again on the 1st October 2004; I became an employer of two personal assistants. Direct Payments has given me back my independence again with me having the choice and control over my life. Most of my hours are used for personal support and assistance including some domestic chores. I now have the freedom to continue with my voluntary work and other interests. Having my personal assistants has enabled this. I do the payroll and paperwork each month and there is support at the end of a phone from the Inland Revenue and your support worker if you need it.

Since using direct payments I have been able to get my life back on track. My wife has regained her independence and most importantly her role as a wife rather than a ‘carer’. My friends and family who helped me through a difficult time are now able to get on with their lives instead of supporting me. I look back on the situation I found myself in, and how I used to ‘just’ manage! I also look back and think what state our relationship would have been in now if we had carried on as before without any proper support and assistance.

In April I agreed to trial the innovative Client Pre-paid Card for KCC Social Services. I no longer have a chequebook account and just use standing orders and occasionally cash to pay my personal assistants and to pay the Inland Revenue the PAYE and NI contributions. A real plus point has been the reduction in the paperwork.

With my Direct Payment I now have control over my life with the flexibility I require. With hindsight, I should have applied for the liberating option of direct payments far earlier than I did.

If you have a story to tell about direct payments and the difference it has made to your life, please write to Stephen De-Cicco Newsletter Editor. Contact details on the back cover.

CILK Annual General Meeting 2006            Back to contents

This year’s AGM will be held on Wednesday 22nd March at the Julie Rose Stadium, Kennington Road, Ashford, Kent. The meeting will commence at 2pm. Mike Oliver has kindly agreed to be our Guest Speaker.

All CILK members and supporters are invited to attend. Invitations will be sent out in the second week of February. The venue is fully accessible with plenty of level parking. Refreshment will be provided.

Telephone 01622 355777 for further details or Email: enquiry@cilk.org.uk

Disability Discrimination Act 2005            Back to contents

The Code of Practice for the new duties on public bodies to produce, with the involvement of disabled people, disability equality plans to cover all their services, is now available from the Disability Rights Commission (DRC).

This will show how public bodies will work to eliminate discrimination against disabled people, promote equality of opportunity, present a positive image of disabled people, prevent harassment and support the inclusion of disabled people in public life, in the wider sense.

Local groups can use this new law to develop local campaigning on the right to independent living. You should be asking them what they will put in the budget to pay for the involvement of disabled people in writing, implementing, and evaluating the plan. Local groups could negotiate the setting up of projects designed to support and facilitate the active involvement of disabled people in the development of these plans.
Go to the DRC website to get more information about the code of practice www.drc-gb.org
Coalition on Charging - The Tax No-one Wants to Cut!

The Coalition on Charging has been campaigning for the complete abolition of charges for community care services for disabled and older people. Disabled and older people pay for the essential support services they need three times, through direct taxation, the Council tax and through community care charges.
Ministers have indicated that the Government is willing to look at the whole question of charging when introducing its new White Paper on Health and Social Care.

For more information about the Coalition’s work please contact campaigns.da@dial.pipex.com

Latest news… from NCIL           Back to contents

Derby City Council stops charging disabled and older people for “home care services”

They have decided charging was a barrier to Independent Living and not a cost efficient way to manage their budget.

West London Council proposes to also abolish charging in March 2006.

Hopefully a new trend in 2006? to end this form of discrimination which only leaves disabled people in poverty.

Office Address              Back to contents

CILK
C/o Red Cross HQ
25, College Road
Maidstone
Kent ME15 6SX

Phone: 01622 355777
Fax: 01622 690012
Email: enquiry@cilk.org.uk

CILK Website: www.cilk.org.uk

CILK is a Registered Charity (Number 1107079) and Company Limited by guarantee (Number 4854897), with no shareholders.

CILK is a full member of the National Centre for Independent Living (NCIL).

CILK is run, controlled and managed by disabled people.

Newsletter published by

Centre for Independent Living Kent. 25 College Road, Maidstone, Kent ME15 6SX.
Telephone 01622 355777.
Email: enquiry@cilk.org.uk

The views expressed in this newsletter are not necessarily those of the publisher and although every effort has been made to ensure that the information is accurate, the publishers take no responsibility for errors or omissions. January 2006