SPAEN Newsletter The PA Employer Spring 2004

The PA Employer Winter 2005

Inside this issue:

The right to independent living
Editorial
Press briefing
Annual General Meeting
Drive for members
Partnership not turf wars
Joanna Chance - Young business woman of the year
Training officer news
Project administrator news
A question of access
Capacity building & policy group
A tale of Mrs Necessary

The right to independent living

2005 will see the campaign for the right to independent living for disabled people gather momentum throughout the UK. On April the 15th this year Bert Massie Chief Executive of the Disability Rights Commission(DRC) gave a talk on the subject. The following is a brief extract from his speech; powerful and challenging in its message. The full text can be found on the DRC web site www.drc-gb.org

Independence is something we all strive for, for it gives us confidence to tackle life’s challenges. To me, Independent Living is inextricably linked to FREEDOM.

To withdraw or prevent an individual’s independence must therefore be considered a punishment; after all, that’s often how parents discipline children (you’re grounded) or society deals with criminals. To this end, I would contend that independent living is a fundamental human right of disabled people, and to deny it is tantamount to punishment. And what is the crime? To be too expensive to support in the community? Or to be over six stone - too heavy to lift? Sometimes it feels like we are being punished for shortcomings of a social care system that finds it almost impossible to respond flexibly to meet Our Independent Living need.

On 2nd October 2000, when the UK government introduced the framework to take cases under the Human Rights Act, the then Home Office Minister Jack Straw said the intention was to do more than require government and public authorities to comply with the European Convention.“ Over time”, he said, the Human Rights Act will bring about the creation of a human rights culture in Britain”. Disabled people have much to gain from the philosophy of personal freedom and equal dignity that underpins the European Convention on HR, as it fits well with the fundamental principles of Independent Living. So what are these fundamental principles of Independent Living as developed by the disabled people’s Independent Living Movement?

“Independent Living” means that disabled people have access to the same life opportunities and the same choices in every day life that their non-disabled brothers and sisters, neighbours and friends take for granted. That includes growing up in their families, being educated in the local neighbourhood school, using the same public transport, getting employment that is in line with their education and skills, having equal access to the same public goods and services. Most importantly, just like everyone else, disabled people need to be in charge of their own lives, need to think and speak for themselves without interference from others’. We at SPAEN will be actively promoting the right to independent living because we believe disabled people have the right to CHOICE, CONTROL and FLEXIBILITY in our lives; without it we have no FREEDOM.

Editorial

Hello and how are you?

As usual SPAEN has been kept going dealing with the issues that affect us as Personal Assistant Employers or those supporting them and the people who are still exploring the idea of an independent living package.

The major development since our last newsletter has been the indemnity cover scheme. Everyone by now should have had the letter explaining our proposed indemnity cover scheme through Peninsula Business Services for Personal Assistant Employers. In the spirit of the Independent Living Movement’s principle of choice and control SPAEN has taken the opportunity to give you, our members, the support that in the short, medium and long term will benefit and enhance the good employment practice of Personal Assistant Employers.

A letter was sent to the Director of Social Work, or the equivalent, in the 32 Local Authority areas, to promote the fact a user led national organisation of disabled people whose member’s control their own support packages employing staff had now the opportunity through SPAEN to access an Indemnity Cover Scheme enhancing and safeguarding their employer’s role.

The intention for doing this was simple. SPAEN encourage Local Authorities to add the cost of the scheme into the contingency/on cost of a support package, particularly as this opportunity was only now a possibility. In doing so people would have the choice and control to purchase SPAEN membership, including the indemnity cover if they so wished. To date some LA’s we note are supportive of the idea, others we await their decision or comment.

So collectively we should be reminding our Local Authorities that the whole purpose of Direct Payments is to promote self determination, CHOICE and CONTROL. We need to be able to make the decisions that will enhance our employer’s role and further develop good practice. Therefore, we should be able to have the flexibility to do this. To this end the costing of packages should reflect this aim.

SPAEN firmly believes that CHOICE and CONTROL means exactly that. If PAE’s choose to make their employers’ role one which is easy to control and manage, and this can be supported by joining an organisation that will help them to do this effectively, why ask permission? Have we not been assessed and deemed willing and able (with or without support) and responsible to manage our own affairs? Then if so, why do we have to return and plead every time we want to do something extra or different?

To answer the last question ourselves; we did so in this instance because we are responsible people aware of our accountability for the public pound. Also we wanted to promote the positive concept of SPAEN membership with indemnity cover for ‘best value’ which undoubtedly is offered to users, with benefits too, for user led organisations, LA’s and others concerned with good employment practice in the Independent Living Movement.

SPAEN can offer membership and indemnity cover at the cost outlined in our letter to you. Who pays for it is up to you. LA’s might, if they wish, give you the money. Then it can be argued that, you can, if you choose, pay it yourself and take control of your situation.

Needless to say all of us here in the SPAEN office wish you a Merry Christmas and a Happy New Year; and we hope that the World and your active participation in it, is giving you the joy and satisfaction that equal citizenship through your self managed independent living package should bring; CHOICE, CONTROL and indeed FLEXABILITY!

Peter Brawley
SPAEN

Press briefing

Peninsula, the UK’s largest employment law firm is a service available to all employers and provides a comprehensive package in the protection of all employers signed up with Peninsula. For over 21 years now, Peninsula has covered employment law closely and is the leading authority in government red tape and legislation. The experienced and skilled staff we have here at Peninsula offers to provide an unparalleled service in care and protection for employers around the country.

The benefits of Peninsula has also been recently been boosted with the development of a new service where any tribunal cases that do arise will be paid for by Peninsula. This will cover legal costs, administration costs and most notably the costs of any potential compensation claims and damages.

Dramatic increase of government red tape in recent years has meant that all businesses of differing sizes and functions should be concerned. Traditional ideas of what constitutes as an employer is no longer so clear cut with the lines now being continuously blurred through government intervention. This means that anyone who employs an individual in a vast variety of scenarios could find themselves before a tribunal answering to claims of improper conduct and could face heavy penalties in terms of fines.

Businesses today must be very careful not to allow themselves to be caught out with red tape as the employment industry is now a minefield with even the most dedicated employers in the UK potentially falling into the trap. Businesses, regardless of size are in a complicated position where they no longer have a limited liability with their size. Any person who is in a position offering a contract of employment to an individual is therefore eligible to abide by employment red tape.

Annual general meeting

The 5th Annual General Meeting(AGM) of SPAEN, held at the Centre for Independent Living in Glasgow on 12th October 2004, was attended by some 40 plus members of SPAEN both full and associate.

The formal business of the AGM saw the re-election of the Executive Committee, the adoption of the annual accounts and the re-appointment of our Auditor. It also gave the Executive Committee and Staff the opportunity to bring the members present up to speed on various initiatives that SPAEN has been working on over the last year.

After the normal AGM business had been dealt with, our guest speaker Mrs Dee Leggett, a consultant from Peninsula Business Services, addressed the meeting. She has been working closely with SPAEN over the last three months to develop a tailored package of support for Personal Assistant Employers. This would give them the benefit of indemnity cover on all personnel issues in their employers role.

This new initiative proposed for the future of our members and their role as competent and responsible employers sparked a lively debate within the AGM Forum after Mrs Leggett’s presentation. As was expected some concerns were raised; however on balance the support for this initiative was evident from the majority of those who attended. A full AGM report should now be in your possession, if not please contact the office and a copy will be sent to you.

We look forward to seeing you all again at our next AGM in the New Year. Incidentally, the venue for the next AGM is open to suggestions? If you have any thoughts we will be pleased to hear from you.

Drive for members

To date SPAEN has a membership of 246. If you are not a member but would like to be please contact us. The more members we have the stronger our voice will be promoting the interests of personal assistant employers and those supporting them. By becoming a member you will have the benefit and security of being part of an organisation of disabled people like yourself who strive to secure and promote your interests. Strength in unity. Contact SPAEN for further information.

Partnership not turf wars

The history of the disability rights movement is founded on local groups and organisations of disabled people coming together nationally (and internationally) to strive for equality and inclusion. National organisations are not set up to replace or to marginalise local user-led organisations, but to work in partnership with them. The strength of national organisations is found in the strength of local organisations and vice versa. The British Council of Disabled People and the National CIL offer a national voice and do work which augments rather than supplants that which is provided by local CILs and local organisations of disabled people.

SPAEN was set up to boost the voice of personal assistant employers throughout Scotland; to seek an inclusive society in which disabled people can lead full and independent lives; and to promote mutual support among those who are taking control of the management of everyday affairs. Thus, SPAEN– like other user-led organisations – is in the ‘business’ of advancing the position of disabled people. Its members know – for they are also members of local user-led organisations - that its visions, goals and objectives are best achieved through working in co-operation with other organisations of disabled people. It is in disabled people’s interests - and therefore SPAEN’s interests - that CILs and other userled service providers remain in the position to continue as centres of excellence.

However, it is understood that some work is best done at a local level and some is best done at national level, while other work needs to be done at both national and local levels. CILs and other local user-led organisations offer services such as PA co-ordinaters, PA registers, pay roles and PA training that are not best placed to be offered at a national level. SPAEN however provides services on a wider scale to its members, local authorities and user-led support organisations across Scotland. These include advice and information on independent living and employment issues, enhanced disclosure checks for PAs, a national network of PA peer support, information and training days held locally throughout the country. Roles will vary or sometimes overlap, but they need not conflict. It is up to user-led organisations and groups in Scotland to hopefully agree as much.

This process should not be about individuals losing or keeping jobs, or about organisations losing or retaining funding, and no group or organisation should be made to feel unnecessarily threatened. This process should be about local and national organisations determining how best to advance the social inclusion of disabled people. As in all walks of life, there may be problems and disagreements between (and within) organisations at local and national level. However, it must be remembered that turf wars only divide the movement and hurt the political and social cause of disabled people.

Kevin Paterson, SPAEN Treasurer

Training officer news

Hello everyone, this has been a busy time with so much going on. I am pleased to report back to you the success of the recent self development program. The program was carried out over five sessions each of three hours duration and was attended by people from a variety of areas. The feedback, which is very much welcomed and will be taken on board, was extremely constructive and considered.

The programmer looks at a wide range of topics encouraging the skills promoting personal development and self awareness. It allows you to review self from a different perspective and opens your awareness to how others around you relate and perceive your actions and communication. It is based on an experiential format which encourages participation and self examination. The programmer is accompanied by a handbook which can be used in the future as a form of reference book for the techniques explained on the course.

I thoroughly enjoyed the sessions which were very much a learning experience for me and wish to take this opportunity of thanking the participants for sharing their life experiences and their view of the work with me.

The training programmers that are available, at present, are listed on our website. However, should you find that you wish to learn or increase you skills on an area which does not appear to be covered please do not hesitate to contact this office. It is our intention to very much respond and focus our experiential learning programs on the topics relevant and important to our members.

Regarding the induction program, promoting good employment practice, this is currently being considered further with the potential introduction and rollout of the Peninsula Business Scheme which I am sure you will all now be familiar with. This will be updated on the website also and I am delighted to be involved in such an innovative and highly relevant initiative.

Violet Keenan, SPAEN Training Officer

Joanna Chance - Young business woman of the year

Does an independent living package really allow you to get on with your life and the things you want to do? The answer is yes it can. Joanna Chance’s experience is a positive example of what is possible.

Joanna’s main aim in life is to lead as much of an independent life as possible supported by her personal assistants and family.

To this end Jo put her interest in plants and gardening together and formed her own business where her customers come and buy plants at her small nursery on the family owned farm. She provides gardening services to local people; free advice and a warm smile are all included with her service. Most of Jo’s plants are grown from seed on which she lavishes great care and attention. Many of the perennials and herbs are also grown from seed. Jo has ‘green fingers’ when it comes to propagating plants from cuttings.

Joanna deals with Asperger’s Syndrome and epilepsy on a daily basis. As a result of Jo’s enthusiasm for the gardening business Jo has had to work on her communication skills. This has helped to make her more socially interactive.

The Prince’s Trust helped Jo get started; they are enthusiastic and flexible in their support. Jo has won the Prince’s Scottish Youth Business Trust: Regional Business Award Winner Year 2003. There was not a dry eye from her family, friends and personal assistants at the Prince’s Trust Award Ceremony. Everyone knew what an achievement this has been for Jo.

As for the future, Jo would love to have her own home whilst still being near her family and friends. To this extent she has already designed her house.

I have no doubt that one day Jo will achieve this dream.

Project administrator's news

During the previous three months since the last newsletter, the administrative support of SPAEN has been focused not only on the normal day to day running of the organisation but also looking at ways, from an administrative point of view we support our new business activities. The time is now right for SPAEN to seek sources of funding to support at least 1 other full time clerical post and would ideally like to recruit another part time clerical worker in addition to this. That said, until sources of income are identified and secured we will manage with the staff resources that we have at our disposal. In the meantime we will continue the services we already provide as all our staff are able to inter-operate to support each others roles.

There has been, as you are no doubt aware, a significant increase in the volume of information being circulated by SPAEN and hopefully it has been getting through to you. If not, please let us know and we will rectify this for you. It has been very encouraging for me to see so many of our surveys coming back from our members with such positive and constructive comments. This has a major impact on our organisation as it shows our grant making organisations that we are fulfilling our obligations in line with the agreed outputs and outcomes and enables us to be confident in the knowledge that we will have gathered all the relevant information to support future funding applications.

If you have an email address I would be grateful if you could forward the details to me as we wish to, in the future, distribute our information electronically where possible. We are going to focus a lot more on making the web-site as informative and user friendly as possible as all the staff are now trained in updating the web-site from here in the office. We envisage that all areas of the web-site will be fully operational in the next three to six months and will incorporate all the information surrounding our more recent areas of work. As you can see we are very busy adapting our services at present to incorporate all our new work and it is a very exciting time for us. All I would like to add is that I wish you, all our members and associates, a very Happy Christmas and a peaceful and prosperous New Year.

Derek Kirkaldy. SPAEN Project Administrator

A question of access

In a recent article published in the Big Issue, two of our members James McIntosh (Executive Committee) and Alan Dick were asked to diarise a typical week in their lives and outline the typical barriers that they still encounter post implementation of the final phase of the Disability Discrimination Act. The full article is available to read on another page here on the website, just follow the link: Silent prejudice.

Capacity building and policy group

SPAEN are currently planning a capacity building program early in the New Year for the Executive Committee. However, we would be delighted to hear from members who may be interested in taking part in the program too. If, in the future, you would like become a member of the Executive Committee why not get started now.

Again in the New Year a Policy Group will be set up which will meet four times a year to discuss and plan SPAEN’s future policy and procedural issues surrounding the work that we do. This is a good opportunity for our grassroots members to get more actively involved in what we do.

If you do really want to get involved then contact the SPAEN Office by telephone, e-mail or letter expressing your interest. We will then contact you in the New Year to advise you on how we propose to take these measures forward.

Your SPAEN needs you!

Spaen’s Halloween Party

A dashing troupe of historical figures, cut a swathe through the partygoers

The tale of Mrs Necessary-but-not-nice

In 1984, I got a new job as the Glasgow Forum on Disability Development Officer and moved back to my hometown outside the city. Although Monica was the Principal Development Officer for Physical Disability in Derbyshire, she decided to come to Scotland with me as my wife. As the only two disabled candidates, we had met in Derbyshire a year earlier at the interview for the post she was occupying.

After months of looking at new houses where you could not swing a cat, never mind manoeuvre a wheelchair, and old houses with narrow corridors and awkward corners, we finally found a house we both liked and felt could accommodate our needs.

This house had been a stables and coach house at the turn of the twentieth century. Badly converted, it was nevertheless fully accessible inside for it was completely 'open plan', with no corridors or awkward corners. There was ample car park space and it was next to a housing scheme, where we thought we could recruit our helpers. In any case, the house was next to the river; and I had plans to go fishing and walk the dog of an evening.

It needed a lot done to it, but it had potential. Monica's first degree was in architecture and her sister was a practicing architect. Together, we spent many an evening sketching out plans for our new home. Monica's degenerative impairment meant we needed ramps, lifts, accessible toilets and kitchen.

With our plans worked out and a local architect contracted to oversee the work, we decided to confront the powers-that-be who had the money. So, we organised a liaison meeting between the Building Control Officer, who held the improvement grant purse strings and the Occupational Therapist, the armoured guard at the gates of the Social Work vaults.

Tea and biscuits were prepared on a rickety old table in the middle of a vast empty expanse, which would later become our cramped lounge overcrowded with furniture and knickknacks. The Building Control Officer and our architect were deep in technical jargon when there was a knock on the door. I went to open it.

"I'm here to give you what is necessary, not what is nice." Our notoriety had obviously gone before us and the lady was defiantly making her stance from the outset.
- Hello there, and you are? I replied. She then introduced herself and so began a three-month relationship of dingdong debate and argument.

Our cosy get-together quickly disintegrated into a farce. The Building Control Officer and architect disappeared into the loft, while the OT swanned into the kitchen. Monica and I were left holding the plate of biscuits and teapot. We decided to follow her.

- It's only necessary to have a third of the kitchen lowered, not all of it, she announced.
- But that means two-thirds of my kitchen will be beyond my reach, Monica pointed out.
- Well, that's the rule, she replied, and it's not necessary to have a lift and a downstairs toilet, only one or the other.
By this time my collar was getting rather warm.
- Okay, I exclaimed, let's take your criteria of what's necessary and what's nice. Is it necessary or is it nice to go to bed at night?
- Of course it's necessary to go to bed at night, she replied.
- The bedroom is upstairs, therefore it is necessary to have a wheelchair lift. Agreed?
She reluctantly nodded. I pushed on, in a rather naughty manner.
- Is it necessary or is it nice to be caught short all the way upstairs?
- Oh, you don't need to be so rude. Why didn't you buy a bungalow in the first place?

There was no polite answer, so we steered the conversation to the question of the ramp. The coach house had belonged to the owner of the main house next door and there was no dividing wall between the two properties. We had designed a new entrance to the house, which incorporated a porch to recharge the wheelchairs. Outside the open area between the two dwellings would be landscaped with a ramp running against a raised flowerbed and enclosed by a wall separating our property from our neighbours.

- Why not keep your front door where it is and use a metal ramp to gain entry?" the OT asked.
After explaining why, we agreed to meet again with respective quotes - she getting a quote for the metal ramp, I getting a quote just for the outside landscaping.

In the meantime I phoned an acquaintance of mine. We had met at several conferences and had a mutual friend, whom we both visited. His name was Selwyn Goldsmith, author of "Designing for the disabled", the authoritative book on housing and environmental design to accommodate the needs of disabled people. Armed with information supplied by Selwyn, regarding the technical comparison between metal and concrete ramps, and the quote, I met whom I now called "Mrs Necessary-but-not-nice" at her office a few weeks later.

I casually dropped Selwyn's name into the conversation.
- You know Selwyn Goldsmith? she asked alarmingly.

- Oh yes, I laboured, I've known him for some time. He explained to me that a concrete ramp…
And so I pressed on with my argument. As far as the comparison of quotes went, mine was £400 above hers, but mine included the raised bed and dividing wall, which I considered better value.

All went quiet for three or four weeks after that meeting. Returning to my mother's home one night, where I had temporary digs, I received a phone call from Monica who was still in Derbyshire. She had phoned the OT to find out what was happening to our request for grant aid. She had been told the OT had written a report and had sent it up to committee. The report recommended a third of a kitchen should be adapted and a stair lift installed. Nothing about an accessible bathroom. Nothing about a ramp. Monica had requested a copy of the report, which was refused, as it was council property. We knew we had a right to see the report before it went to committee, so I phoned the Principal Officer responsible for taking such reports to committee the next morning. A copy of the report was sent to us and Monica and I spent one of our rare weekends together writing our own report to be submitted to committee alongside the OT's. Neither report reached committee. It was unheard of to have a client report submitted to committee alongside an officer's report, so the Chairman held a 'Chairman's meeting' with his senior officers.

The upshot of all our efforts was a grant three times greater than that recommended by the OT. With this money and that of our combined savings Monica and I managed to build the house we had planned.

There was even some of our own money left over for my own prize project - an integral garage. I wanted to be able to go to work in the bleak mid-winter without having to go out in the cold to open a garage door. The danger of falling over, or getting a cold was too great. I wanted to walk from the kitchen straight into the garage. There I could enter the car and open the garage door with a remote control.

That 'need' was completely out with the remit of the Social Work budget to meet. Yet, that garage allowed me to keep economically active for the next fifteen years. Without it, I would have slipped many a time and been off work for weeks.

The epilogue to this tale is a bit of a damp squib. At a house warming party after the building work and decorating had been completed the conversation inevitably turned to Mrs. Necessary-but-not-nice. Our architect made the suggestion;
- How about sending her a bunch of flowers, with a thank you note saying - I know these are not necessary, but I thought they would be nice.

I thought discretion was the better part of valour, so I refrained from carrying out his suggestion.

Jim Elder-Woodward

Page updated 10/01/2005