newsletter

The PA Employer Summer 2003

Volume 1 Issue 4

THE SUMMER OF NEW BEGINNINGS

• EDITORIAL
• A MESSAGE FROM OUR CONVENOR
• LEGISLATION
• INDEPENDENT LIVING - DO PEOPLE REALLY UNDERSTAND
• FINDING MY FEET
• LEONARDO PROJECT WORKSHOP
• WHY IS A DISABILITY BILL NEEDED
• THE BRITTISH COUNCIL OF DISABLED PEOPLE
• HELP FOR DISABLED PEOPLE TO FIND SUITABLE HOUSING
• CURRENT PROJECTS
• TRAINING AT THE CENTRE FOR INDEPENDENT LIVING IN GLASGOW
• AYRSHIRE INDEPENDENT LIVING NETWORK
• LOTHIAN CENTRE FOR INTEGRATED LIVING
• NATIONAL CENTRE FOR INDEPENDENT LIVING
• CENTRE FOR INDEPENDENT LIVING IN GLASGOW
• PROMOTE INDEPENDENT LIVING - END DISCRIMINATION AGAINST DISABLED PEOPLE
• DIRECT PAYMENTS SCOTLAND
• NEW PUBLICATIONS
• EDWARDS STORY
• PERSONAL ASSISTANT EMPLOYER SUPPORT GROUP
• WHAT DO SPAEN MEMBERS THINK?
• DRIVE FOR MEMBERS

EDITORIAL

June the1st 2003 has come and gone and Direct Payments for Disabled People is at last a statutory right. If we disabled people ask for a direct payment and meet the eligibility criteria then by law the door to choice control and flexibility should be wide open to us.

I don’t know about you, but I am so excited at the prospect of the positive changes that will undoubtedly take place in the lives of so many people and the new opportunities that will that will present themselves. For us all as disabled people at last our ship “The Independent Living” is coming in! We are becoming the captains of our own destiny!

However, amid the excitement SPAEN is conscious that for this ship to navigate the some times stormy waters of everyday living we as captains need to take the responsibility for ensuring our ship is ready for the voyage.

Most of us, who are members of SPAEN, have had the information, training and support from CIL’s or other support organisations, who are well versed in the principles and philosophy of the Independent Living Movement. We have been able to navigate our voyage using Social Services Independent Living Services money and/or the Independent Living Fund, (either the Extension Fund or the later 93 Fund) quite successfully; fully aware of the obligations we have for the public pound as employers or purchasers of services.

It has come to our attention amid all our excitement that blockades are appearing outside the Harbour….and in our opinion quite unnecessary.

A number of members have informed us that some local authorities are informing disabled people in receipt of ILF money that they will be required to set up a separate bank account for their Direct Payment. This could mean some people having three bank accounts! One for their benefits and normal household business, another for ILF money and a further account for their Direct Payment. We feel that this would be very difficult to administer and wont make us very popular with our local bank managers. Surely one account would be sufficient for both the ILF money and the Direct Payment.

We need to hear from you to enable us to build up a picture of what is happening across the country. This will then put us in a stronger position to raise our concerns with both the Scottish Executive and COSLA. We also need to know about any issues you feel may be important to us as an organisation or more importantly to yourselves.

SPAEN is here to assist in any way we can and look forward to working closely with you all over the coming months. Feel free to contact us in the office any time and we will endeavour to assist you fully with any problems or queries that you may have.

Remember your voyage is our voyage we are all a part of the same fleet heading for the same destination.

Peter Brawley
Development Officer

A MESSAGE FROM OUR CONVENOR

Hi there! I hope that you are all enjoying this good weather. Here in the SPAEN office we are busy getting things set up, but we do take the odd half hour to enjoy the sunshine. Derek Kirkaldy, our new administration officer and Marion Bisset, our new clerical assistant have got our office in ship shape condition. We have also been developing our business plan to go alongside our fund raising activities.

In fact a great deal of time has been spent on fund raising. This is a pity as it detracts us from the real purpose of SPAEN, which is to support our members. We have submitted bids to the Community Fund and will shortly submit an application for Section 10 Funding from the Scottish Executive; we are hopeful of their success. We are also submitting proposals to run support services to people receiving direct payments in a number of local authority areas. It must be said that if SPAEN does not attract more money for its continuation, it will not be due to lack of work by SPAEN’s dedicated staff. All this does not mean that we are forgetting our members entirely. With assistance from the Scottish Low Pay Unit we ran a course on employment law for 20 people over 2 days.

Peter Brawley has been up in the Highlands on a number of occasions helping members there who have lost their support organisation. He has also visited Aberdeenshire, Dundee, the Borders and South West Scotland talking to groups and individuals there. The Central Belt has not been forgotten either, where Peter has been helping those in North and South Lanarkshire.

We have new advertising posters which are rather swish so if you would like to display them locally, please give Derek a call and he will send you some. Hopefully this will attract new members, the number of which has now risen to 156.

We are now developing our own web site which will be in operation at the beginning of August. This is the place where you will be able to find immediate information which should help you solve many a problem. The site will enable you to exchange information and news with other members. Finally, please do not forget that the SPAEN offices are open 9am—5pm Monday through to Friday. If you have any problems or just fancy a chat over any issues—please do give us a call.

WE ARE HERE TO HELP YOU!

LEGISLATION

Further Rights for Disabled People Draft regulations laid before Parliament on 8 May 2003 will make significant changes to the employment provisions of the Disability Discrimination Act (DDA). The regulations, which implement a European Union Directive, bring within scope of the DDA a further 1 million small employers, around 7 million additional jobs and 600,000 disabled people who already work in them.

If approved by Parliament, the regulations will come into force on 01 Oct 2004. More information can be found at www.disability.gov.uk.

INDEPENDENT LIVING - DO PEOPLE REALLY UNDERSTAND

With all the attention seriously focussed on being an employer and how to get our local SWD to get it right with our DPs, maybe there is a chance that we forget what this is all about - living the lifestyle of our choice. And if we forget, what hope is there for the rest of the world? When Peter suggested I write something positive or humorous for the newsletter, I was stuck. Peter said, “just tell our members about your last year or so”. I guess he knows me well enough to know that I love to talk about what independent living means to me. So here goes - I hope you can smile at some of my escapades and perhaps identify with some of my views. Most of us have to deal with negative attitudes - you know, “don't know how you cope” or “poor soul” sort of thing. Christmas 2001 saw me seriously ill and eventually the recipient of a permanent tracheotomy and nowadays I carry my trusty suction machine etc etc with me everywhere. People can’t get their heads round the fact that this is actually life enhancing for me - I can do most things, go most places, only stopping occasionally to have my lungs “sooked”. Surely this is the point - with direct payments to pay our PAs plus the right resources of other sorts, we CAN opt to do what we want.

Let me quote from my Christmas 2002 letter:

But the biggest adventure happened in September. Mandy and I headed south to Cornwall to visit both the Eden Project and the Lost Gardens of Heligan - both highly recommended - some return visits hopefully possible. Then across the south coast (dropping in on Donna and kids en route) to have dinner with Wilma and father before their latest QE2 cruise left from Southampton (this one to New York and Bermuda).

No stopping us by this point - onwards to Euro-tunnel and Paris for a long weekend! This was all fairly spontaneous, and we actually arrived in the French capital late on he Friday evening with no accommodation booked…..suffice to say that we saw most of the sights between 1 and 2 AM before finding a very basic hotel to spend the night. However, several things about the hotel were unsatisfactory and we left next day for a much more upmarket residence (booked and largely paid for by Mandy on the basis of “you shouldn’t have to spend your holiday and birthday in uncomfortable circumstances”!)

Thereafter things looked up and the sun shone as we explored the Bois de Boulogne, Eiffel Tower, Rodin Museum, Musee de Invalides, Versailles etc.

Our last day - my birthday - was the best in weather and experiences - on foot, wheel, we covered Notre Dame, Sainte Chappelle, along the banks of the Seine, to the Louvre where we managed to get locked into one section after visiting Mona Lisa and Venus de Milo (details supplied on request!) - beautiful sunset on our wander back to the car, and a kiss from a friendly Frenchman - photos available for inspection!

Driving out of the city we ‘discovered’ Montmarte, and promised ourselves a return visit. The journey home was enhanced by supper at the home of David and Lesley Scott and an unplanned visit to Althorp (home of Princess Diana - much less tacky than I expected) 24 miles short of 2000”

The trip confirmed for me beyond all doubt that living with a trachea is not only possible but has its amusing moments - two books in my head are entitled “Travels with a Trachie” and “Places I’ve Been Suctioned” - publication details to follow. Let’s here some madcap stories from the rest of you.

SUSELLE BOFFEY
VICE CONVENOR - SPAEN

FINDING MY FEET

Hello. For those who don't already know me my name is Derek Kirkaldy and I am the administration officer with SPAEN.

I would like to take this opportunity to thank everyone with whom I have come into contact with for their support and encouragement since starting my work with SPAEN back in March.

Due to the nature of my background, (ex - Army) coming back into civilian life has been a strange but rewarding experience. I have no doubt that much of that reward can be put down to working with SPAEN. I have been negotiating what can only be described as a steep learning curve which has been both challenging at times but also fulfilling as I have learned so much in such a short time. Peter has imparted his extensive knowledge and this has helped me understand much of what SPAEN is all about but I must confess that I still have so much to learn and look forward to the challenges ahead.

On an administrative level, the office has taken shape and we now have Marion here to assist both Peter and myself, which is invaluable as we are extremely busy. I would like to take this opportunity to remind you all here that I am here for you as members as well as support to Peter and the Executive Committee.

I look forward to meeting as many of you as possible at the Annual General Meeting in Perth on 22 Sept 2003. If you have not sent back your reply slip for the AGM do not worry as there is still time to let us know if you would like to attend. This can be done by either returning your slips, telephoning or via email.

On the subject of email, I would be grateful if members who have access to the internet could forward their email addresses. We will then be able to get information to you quicker than ever.

Derek Kirkaldy

LEONARDO PROJECT WORKSHOP

Nina Baker is involved with an EU project funded by the Leonardo Agency, looking at the barriers facing young physically disabled people in their search for education, training and employment appropriate to their abilities and aspirations. This project is coming to an end and we are holding a workshop from 15 -17 Sept 2003 in Glasgow. One of the purposes of this workshop is to try out two distant learning packages. One is for young disabled people, the other for potential employers (and possibly for careers staff, carers etc). Other parts of the Workshop shall include opportunities to show off what is going on in the disability field in Scotland and recent research.

I am looking for assistance in the following areas:

1. I am looking physically disabled people aged 16 - 25 who would be willing to attend on the 15 Sept 2003 and help us critically assess the distance learning package, there will be a social event in the afternoon and lunch will also be provided. This event will best suit articulate youngsters (interpreters welcome) and may not be suitable for young people with a significant learning disability, as they will be asked to assimilate material from computers and printed materials and comment on them.
2. Any individuals or colleagues in the disability service provision field or disability research are invited to come along and share your views and knowledge and hear what else is going on.
3. Do you have a project, programme, piece of research relating to employment of disabled people (especially younger people) you could talk about for 20 minutes? There are talk slots available on the afternoon of 15 Sept 2003.
4. Do you have or know of a project relating to employment that small numbers of people (from Hungary, Romania and Germany mostly) could visit on the afternoon of the 16 Sept 2003.

The full programme is not yet available, but the event is completely free of charge and is being held in the University of Glasgow’s most accessible building - the brand new Wolfson Medical Building on University Avenue. There may be some funding to enable young disabled people to attend, to cover travel etc but unfortunately the costs of employing PAs/carers cannot be met.

Forms to attend will be circulated soon and will be available on our website which is www.elec.gla.ac.uk/projects/Leonardo/leonardo from mid August. I would be grateful if you could contact me as soon as possible even if it is tentative about what you might be able to offer.

Further information can be obtained from the SPAEN Office or direct to bakerwhitelaw@care4free.net.

WHY IS A DISABILITY BILL NEEDED

Where is Change Needed?

The Government has agreed to address the Disability Rights Task Force’s concerns in the areas below. The DRC believes that there is a pressing case for legal change and that disabled people have waited a long time already.

• Landlords are not required to consider reasonable adjustments for disabled tenants, such as allowing them to adapt their own home (for example, by installing a handrail), or by allowing assistance dogs on the premises.
• Transport is not covered by the DDA services provisions (Part III).Discrimination that takes place on a bus or train, such as forcing a person to leave the vehicle, remains lawful.
• Local authorities statutory duties are exempt, including matters such as highways, pavements, planning, and even prisons.
• The DDA definition of disability does not cover people with HIV from the point of diagnosis, or those undergoing substantial treatment for cancer.
• A public sector duty to promote equal opportunities for disabled people would reflect the Race Relations (Amendment) Act provision.The Disability Rights Task Force felt that this was essential to tackle institutional discrimination and make substantial progress.The Act currently relies solely on individual disabled people to take cases.
• Councillors need to be covered by the DDA.

Employment Tribunals should be given the power to order re-instatement in appropriate cases where disability discrimination is established. (This power already exists where an unfair dismissal claim is upheld).

For More Information visit: www.drc.org.uk

THE BRITTISH COUNCIL OF DISABLED PEOPLE

Genetics, Bioethics and Disability.

The BCODP is looking for trainees who want to learn more about the ethical issues around genetics, bioethics and disability and are prepared to develop projects for sharing the knowledge throughout the disability community.

Disabled people and their impairments are two of the principle objects of concern in public discussions of issues such as health care rationing, judgements about quality of life, genetic testing and screening, abortion, euthanasia, gene therapy, stem cell research and similar topics. Because of the general lack of knowledge about and confidence with these issues, disabled people have been marginalised as active participants in public debates.

The project aims to empower disabled people to be come informed participants in bioethical debates. Trainees will receive an introduction to the subject drawing together complex ethical issues in a fair and balanced way and allow them to develop effective means of engaging the wider disability community in these key social questions. Training will include a chance to discuss these issues with major figures in the fields of genetics and bioethics.

In the first stage, participants will receive intensive training (over four weekends) 21-23 Nov 2003, 16-18 Jan, 27-29 Feb, 19-21 Mar 2004 on the social and ethical issues surrounding genetics and bioethics and how these relate to the lives of disabled people. The second stage will involve this group developing methods of engaging disabled people in the subject.

The third stage will see the development of a training and information pack. This pack and the group of disabled trainers will together provide a valuable resource to inform and empower disabled people at the grassroots to take a fuller part in local, national and international debates on bioethics. The trainee must be: a disabled person, familiar with the social model of disability, have some training experience, interested in genetics, able to commit the time to four weekend sessions and be prepared to cascade the training to other disabled people.

The training will take place near Cardiff with all costs for travel, accommodation and training being met by the organisers.

Places are limited so please get in touch with us here at SPAEN or contact Julie Marchbank on either 01264 860516 or emails to julie@jmarchbank.fsnet.co.uk.

HELP FOR DISABLED PEOPLE TO FIND SUITABLE HOUSING

A group of disabled people from across Scotland are trying to establish a new network of housing information and advice services, DISABLED PERSONS HOUSING NETWORK (SCOTLAND). Disabled Persons Housing Services (DPHS’s) are available to all disabled people and typically provide a range of services from basis advice on where to apply for suitable housing to handling complex casework and housing advocacy.

DPHS’s already exist in some areas of Scotland, including Glasgow, Renfrewshire and Aberdeen and have proved to be very successful. The new network hopes to secure funding to expand the Network across Scotland.

For more information please contact Tony Miller (Secretary) on 01779 490908
E-mail: dphsa@supanet.com

Other contacts are as follows:

Grant Carson, Glasgow DPHS
E-mail: GDPHS@CILiG.co.uk

Jim Tassie, Renfrewshire DPHS
E-mail: dphs@dphsr.co.uk

Russell MacMillan, East Renfrewshire DPHS
E-mail: Russell.MacMillan@east Renfrewshire.gov.uk

All of the above can be contacted at any time.

CURRENT PROJECTS

SPAEN has now registered with the Central Registered Body in Scotland. This means that we are now in a position to process Disclosure checks on prospective Personal Assistants on your behalf. For more information you can contact us by telephone or email.

TRAINING AT THE CENTRE FOR INDEPENDENT LIVING IN GLASGOW

The Training Service at the Centre for Independent Living in Glasgow is planning a new season of training sessions and workshops for Personal Assistant Employers or individuals interested in Direct Payments. These sessions cover a wide range of useful and practical topics to help you get the most from independent living. The sessions are for people who live in Glasgow.

If you want to find out more then there will be a booklet available shortly.

Contact: John Dever
Centre for Independent Living in Glasgow
117-127 Brook Street, Glasgow
G40 3AP
Telephone 0141 550 4455,
Minicom 0141 554 6482
Fax 0141 550 4858

AYRSHIRE INDEPENDENT LIVING NETWORK

The Ayrshire Independent Living Network was funded for the European Year of Disabled People with £10,000 in conjunction with another South Ayrshire Group for a fun day at Ayr Racecourse which was very successful and had over 60 stalls from local voluntary organisations.

One of our members is planning a parachute jump in tandem on 21 September 2003 to celebrate the European Year of Disabled People. Marysia is a wheelchair user and if you would like to sponsor her you can either contact us and we will pass on your details to AILN or you can contact them directly on 01294—272260 or alternatively you can e-mail them on mmamail@ailn.org.

We have been really busy with enquiries the last couple of months due to the offer of Direct Payments becoming mandatory on 1st June 2003. We are still working towards an increase in PA rates within South Ayrshire as this is still one of the lowest rates in Scotland and we would be interested to know how other areas in Scotland are fairing.

LOTHIAN CENTRE FOR INTEGRATED LIVING

Service Lives to Fight Another Day

Scotland’s only counselling service for disabled people has survived a funding crisis. The Lothian Centre for Integrated Living (LCIL) Peer Counselling Service (PCS) in Edinburgh has received three years funding from the Scottish Executive, after six years of support from the Community Fund came to an end. The Peer Counselling Service provides professional counselling by disabled people for disabled people. The Executive Funding will allow the service to continue counselling disabled people in Edinburgh and the Lothians. It also means that professional counselling training to Diploma level will continue for the current group of disabled students. For more information on this service contact the co-ordinator on 0131 475 2350.

It’s Your Life Project

The Camelot Foundation, Transforming Lives Fund has awarded a grant to the LCIL for its groundbreaking It’s Your Life Project. This is a unique new project offering support and advice to disabled people aged 16—25. The journey towards adulthood and independence requires numerous decisions: where to live, whether to study or get a job, where relationships fit in and so on.

Whilst such questions affect all young people, it can be particularly difficult for young disabled people to make informed choices, and It’s Your Life addresses this problem directly. It’s Your Life aims to increase the awareness of Direct Payments and Independent Living options and to address the social isolation experienced by some disabled people by providing a peer support group. On an individual basis, professional peer counselling will be available. A group of project participants will design a professionally printed leaflet and visit schools and youth groups to publicise the project. They will also be invited to share their opinions on the different areas of the project, allowing LCIL to continue to improve its service.

It’s Your Life is funded until May 2005, by which time LCIL will have produced a guide to good practice in association with Dr Charlotte Pearson of the Strathclyde Centre for Disability Research. These guidelines will be disseminated to interested organisations all over the UK.

The Camelot Funding has enabled LCIL to employ a part time Training Officer to oversee It’s Your Life. Abi Gibb can be contacted on 0131 475 2350 for more information about this project, or check out LCIL’s web-site at www.lothiancil.org.uk.

NATIONAL CENTRE FOR INDEPENDENT LIVING

Living Independently! - It’s happened, we are pleased to inform you that we are now independent from the British Council of Disabled People (BCODP).

After what has been a difficult period for NCIL, our establishment as a newly independent organisation, will make us stronger than ever and enable us to redouble our commitment to the promotion of Independent Living and Direct Payments. The ’new’ NCIL core objectives are:

• To promote Independent Living
• To set up a forum for discussion of Independent Living
• To contribute to national policy development relating to Independent Living
• To promote and support the use of Direct Payments to enable Independent Living
• To ensure that the options of Independent Living and Direct Payments are available to all who want them, on a basis of equality

CENTRE FOR INDEPENDENT LIVING IN GLASGOW

The Centre for Independent Living in Glasgow will host a 1 day training event entitled “Circles of Support” which will be conducted by Scottish Human Services. This will take place on the 13 Oct 2003 and spaces will be allocated on a first come first served basis. The cost of the course is £80 per person and this will include a comprehensive training support package and lunch. If you are interested you should contact Maureen McPeak on 0141 550 4455 by no later than 01 Oct 2003.

PROMOTE INDEPENDENT LIVING - END DISCRIMINATION AGAINST DISABLED PEOPLE

1st European Congress on Independent Living

We, four hundred participants from many European Countries gathered at the 1st European Congress on Independent Living, held in Tenerife in the framework of the 2003 European Year of Disabled People, urge that the Canary Islands and the Spanish Governments take the lead in advocating for the implementation of this declaration in European Union policy, specifically in the work for the upcoming Non Discrimination Directive on Disability, and the European Action Plan on Disability. Principles of Independent Living we, disabled people, must have the means to take responsibility for our lives and actions in common with non-disabled people. Most of the problems that disabled people encounter are not medical but social, economic and political.

After a history of marginalisation and exclusion, disabled people are NOW demanding the right to choose how we live our lives in the community. We demand the same opportunities and choices and the same degree of control and self-direction over our everyday lives that non disabled people take for granted. Our full and equal participation in society will enable us to reach our maximum potential as human beings, and in so doing contribute to the economic and social life of the communities we live in. This has historically been denied us. Disabled people must be viewed as the experts on their lives. As experts, we have the right and responsibility to speak on our own behalf.

Furthermore, disabled people need to control our own organisations. Independent Living is a fundamental human right for all disabled people regardless of the nature and the extent of their impairment. These include people with learning difficulties, mental health system users and survivors, disabled children and older disabled people. All life and diversity should be valued. Every human being should have the right to make choices about issues affecting their lives. We affirm in all activities of the public sector such as infrastructure planning, education, transportation, employment measures and other services, the needs of disabled people must be fully taken into account through universal and inclusive and design. Service design and implementation must follow independent living principles and centre on a person’s individual needs. Personal Assistance enables persons with physical, sensory, intellectual and other impairments to live a self directed life in the community, enabling fuller participation in all human activities. Examples include parenting, sexual activities, education, employment, environmental development, leisure, culture and politics.

Disabled people should have maximum control over disability and independent living related services. These should include public financing, advocacy, training and peer support for people who may not be able, or wish, to take full control of their lives. It is unacceptable that European disabled citizens are still kept in residential institutions because of the lack of appropriate living alternatives in the community. We stress that independent living support services are essential in order for disabled people to enjoy basic freedoms and must be funded by all governments.

We, disabled people from all over Europe do not accept any funding limitations in regards to our basic freedom. If necessary we are ready to challenge these assumptions about the lack of resources. We urge the European Union (EU) to continue to expand its human rights policies to improve the quality of life for disabled people through freedom of choice and higher quality of services. We condemn any type of segregation and institutionalisation that are a direct violation of our human rights. Governments must implement and enforce legislation that protects the human rights and equal opportunities of disabled people. We urge the EU to adopt measures that will guarantee and prioritise community based, over institution type, solutions in the area of disability support services. Disabled people must be given the choice to convert disability related support services, that are currently received in kind, into the equivalent amount of direct payments.

In compliance with the treaty of Rome we demand that EU Governments adopt a minimum level of direct payment for personal assistance services in all EU countries in order to promote freedom of movement within and between EU states. Furthermore, in promoting standards for inter-operability of goods and services the needs of disabled people must be taken fully into consideration. We demand that the EU require governments of European States fund the development and support of organisations controlled and run by disabled people to promote independent living.

We demand that the EU adopt the necessary measures to prevent discrimination against disabled people in future advances of genetics, science and technology.

Arona, Tenerife, April 26th 2003

Further information can be found at www.dpi.org

DIRECT PAYMENTS SCOTLAND

Health and Safety Training

The Royal Society for the Prevention of Accidents (RoSPA) offer an ongoing programme of courses around moving and assisting that may be of use to new support organisations or to individual employers to train their own PA’s. Courses facilitate a person-centred approach to reduce injury rates. More information on 0870 777 2224 or www.rospa.com.

Conference Dates - A major 2 day conference on direct payments is being hosted by Direct Payments Scotland on 29 and 30 Oct 2003. Conference themes will include:

• Re-organising local authority budgets to meet demand for Direct Payments
• Support for non-disabled groups to manage direct payments

The Conference will take place at the MacDonald Holyrood Hotel in Edinburgh. Conference brochures and booking forms can be obtained either through us or by contacting DP Scotland direct on 0131 558 5200

E-Mail Discussion Forum

DPS have launched an exchange E Mail forum on 01 July 2003. This will give anyone with an interest in direct payments an opportunity to try to find solutions to different issues. The forum replaces the web based discussion forum. The main difference being that any comments posted will come direct to your inbox. Anyone wishing to join the forum should email: richardb@dpscotland.org.uk.

NEW PUBLICATIONS

Direct Payments by Janet Leece - £10.50

Janet Leece, Staffordshire Social Service’s Commissioning Officer, has written a very manageable and concise book about Direct Payments, providing background and practical information and tips around the successful implementation of Direct Payments. In particular the book provides case studies to illustrate how direct payments can be applied and also to illustrate the process involved when applying for a Direct Payment such as conducting an assessment. To place an order contact

The Publications Department
Venture Press
15 Kent Street
Birmingham B5 6RD
Tel: 0121 622 8400

Direct Routes to Independence - A guide to local authority implementation and management of Direct Payments
by Frances Hasler, Jane Campbell and Gerry Zarb - £10.00 plus £2.00 pp

This offers detailed practical information covering all aspects of running a Direct payments scheme. All orders should be directed to:

Central Books
99 Wallis Road
London
E9 5LN
Tel: 020 8986 4854

EDWARDS STORY

Edward Stanton has given us kind permission to serialise his story. This is the second instalment of Edwards story following on from the Spring Edition.

...continued

We got to Caldwell House and it was dark. The place looked terrible. It was a big house. I soon found out that boys and girls were kept well separated. We lived and slept in our own houses. Meals were brought round by van and it was just like a jail sentence and it made me think about the prisoners in Barlinnie. The staff were kind and it wasn’t their fault that the food was terrible. Our daily routine was so boring and we would get up at 7am and get washed, dressed and have breakfast by 9am.

We would then be given board games to play all morning and sometimes it was jigsaws. It was the same every day and I was so bored, it didn’t help because I had great difficulty using my hands. Lunch was at 12 noon and sometimes we would sit outside if the weather was hot. In the summertime we would sometimes go on a bus trip to Largs, Saltcoats or Ayr but if the weather was rotten it was more board games for the afternoon. Tea was at 5 pm and then we would get ready for bed at 7pm. The other annoying thing was that I had to have my name sewn in all my clothes, mind you everyone else had the same treatment. Some of the boys I first met at Caldwell are still my friends today and include Martin O’Conner and Brian McMaster. They are at Hillington now with me. During my time at Caldwell my mum re-married and my step-dad was called John Sharp, he was a really nice man and we got on well. John was a crane driver down at Govan Docks and he stayed next door to my gran.

Every Saturday my mum and John would come and visit me and we would have 2 hours together. They always brought me something to eat and a bottle of ginger. In the summertime when I got to sit out in the garden I’d get a stick and dig a hole in the ground. I was always keen to do a bit of gardening and this was the only way I could try it.

The other thing I was trying round about this time was getting round without my wheelchair. I’d get out of my chair and grab hold of my mums arm and try and walk a bit. Sometimes I would sit on the ground and shuffle around. I also practiced rolling to a hut in the grounds and it felt really good when I got there. The hut was empty but the hill down to it was quite steep and a dangerous thing to do really. All these little things helped me to cope with the boredom. I got home twice a year from Caldwell, 2 weeks in summer and 1 at Christmas but this was only after my mum wrote for permission from the doctor. I got home on public transport. By this time the family had moved to Parnie Street and the flat was 3 flights up. It had a room and a scullery. I spent most of my time in the room as my wheelchair would not fit in the scullery. If I wanted to get around the house one of my family would put me on my back and I would slide about using my feet.

My speech was really bad and it made me angry when people didn’t understand me. I wished I had been given speech therapy. My mum used to have to carry me up and down the stairs, this was not easy for her and on at least 2 occasions she ended up in plaster with a slipped disc……...to be continued.

PERSONAL ASSISTANT EMPLOYER SUPPORT GROUP NEWS

Travel Hassles Flying abroad with your wheelchair can be a bit of a lottery—and taking your power chair has added tension as you’re never sure what state they will return your pride and joy. If the departure gate is directly hooked up to the aircraft it can be a lot less nerve wracking than being strapped to a chair and bumped or ‘wheeched’ up and down a steep stairway.

Unfortunately the cheaper airline options often go for the cheaper stairway. And in my experience London Heathrow and Stanstead airports/transfers should be avoided if at all possible. If you are assisted on first, you may be regarded by irate passengers as a queue jumper. On the other hand it saves being banged against peoples hand luggage while roundly blamed this time for delaying their flight. Either way, you and I know we are blameless—its out of our hands and fairly unpredictable. Put logic aside when it comes to where you are seated. Despite requests and pre-booking, you will have a royal battle on your hands if you thought you were getting decent leg room or an aisle seat—you should no better than to expect easy access. Have you forgotten that you are a fully paid up member of the fire hazard club. After touchdown just sit back and relax—you may be there sometime.

Here’s a chance to get to know your flight crew a lot better, not to mention the cleaning staff who are more than happy to hoover round you, and hopefully finally the relief crew for the return flight. Assuming someone comes to help you off the plane before it’s off again, you’ll be transferred to a wheelchair—but not necessarily your own just yet. If, like me you feel and look like a big bag of washing in a big ill-fitting chair it’s hard to maintain that air of dignity. So imagine I’m here bagged and ready, when this skin headed enlightened ‘special assistant’ shakes his head in a mixture of despair and disgust at my current state and says to my companions—”I hate seeing people like that! What’s wrong with him?” then remembering his 2.5 millisecs of Disability Awareness Training redirected it to me. “What’s wrong with you”…

Please send your witty retorts to that stupid question to Patrick Gilbride, PAESG newsletter. c/o CILiG, 117—127 Brook Street, Glasgow G40 3AP.

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