Southampton Centre for Independent Living

This post is written by Valarie Moushigian, the newest member of SCIL’s Management Committee….. 

As SCIL’s Management Committee comprises of 5 males, I felt it was my duty to be co-opted onto the management committee to increase the supremacy of females, and complementing Lesley (who attends as SCIL’s Office Manager) with the strength, bravado, common sense, humour, practical know-how and of course good looks that we both naturally possess. Please bear in mind that these qualities are only an ounce of the skills we possess!

 In all seriousness and with some arrogance put to one side! There is an element of truth in what I’m saying.  I have been a member of SCIL for a year now and have been witness to many successes and some failures.  With my background in business administration and marketing, and using my natural skills I possess as being a woman, I felt it prudent to contribute some of my knowledge in assisting SCIL in continuing to strive for an organisation that can create equality for Disabled People within our society.  Part of this venture means running a successful business alongside empowering Disabled People to fight for their rights to independent living.  

When I first joined SCIL I didn’t consider myself a Disabled Person, however upon speaking with various members I realised that the fears and barriers I was faced with 18 years ago and in the very recent past was called Discrimination!  I have continuously been discriminated against in my work environment but never knew my rights to complain about the issues I was faced with. My employers were ignorant to say the least in realising and understanding their duty towards Disabled People.  I have made a commitment to myself to ensure organisations such as SCIL continue to grow and succeed, and if I can use the skills I have attained from the ignorant culprits and put them to good use within this organisation I feel we are one step closer.

But don’t be fooled, in return for my experience I am hoping to learn more about the Movement and how I can empower our members and future members to fight for their rights and ensure we all live in an inclusive society that holds no barriers!

YOU CAN HELP!!!  We have a ’special’ management committee meeting on 27th February 2007 (more details to follow) and I would very much like our members or future members to come to SCIL to express your views.  You can enjoy some fine afternoon tea and meet the staff while you’re here.  You can even be like me and decide to join the committee.  I would appreciate meeting the members and give you the opportunity to share your opinions on how you think SCIL can improve and grow to work for you.

If you have child care issues, never mind, bring them along. If you have to bring your mother-in-law then that’s ok too, we have a cupboard under the stairs! 

I specifically haven’t included my photograph because I would like to draw attention to your curiosity.  Some say I look very much like Dawn French but then again some of them tell me I resemble Elle MacPherson. When I was 16 I was told I looked like some British rock star I have never heard of, but then again that was going back some years and I am Australian so what would I know! 

I look forward to meeting you on February 27th!

Apologies if I have offended any males, females, mother-in-law’s, Dawn French or Elle. Poor humour is a severe impairment of my Australian heritage

Administrative Assistant ( Ref AA/ILSS )

18.75 Hrs/week: £7,394 p.a.

SCIL is looking for an enthusiastic person to carry out general office duties including keeping records, filing, copying, organising meetings, dealing with enquiries. IT Experience is essential. Duties will include analytical work and minute taking.

For Job pack and more information please contact Robert Droy or Berni Vincent  quoting ref AA/ILSS on:

Telephone: 023 8033 0982

Fax: 023 8020 2648

Minicom: 023 8020 2649

E-Mail: directpayments@southamptoncil.co.uk

Closing date for completed applications is Midday on 14th December 2006. 

The Disability Equality Duty (DED) is an important new duty aimed at promoting disability equality across the public sector. The DED, also referred to as the general duty, sets out what public bodies must have due regard to in order to promote equality of opportunity.Most public bodies are also covered by specific duties, which set out a framework to assist public bodies in meeting their general duty. All public bodies covered by the specific duties must:

Publish a Disability Equality Scheme (including within it an Action Plan)

Involve disabled people in producing the Scheme and Action Plan

Demonstrate they have taken actions in the Scheme and achieved appropriate outcomes

Report on progress and review and revise the Scheme regularly. 

In direct response to this new Disability Equality Duty which comes into force in December 2006, organisations of Disabled People from across the South East are joining forces to launch South East Disability Equality Council (SEDEC), a regional one-stop-shop for public bodies to be able to get informed, consistent advice and guidance around Disability Equality.

The new Duty gives rise to new challenges for public bodies, in particular the continuing involvement of Disabled People and for the first time ever, public bodies will have to take responsibility for tackling the institutional discrimination that Disabled People face.

SEDEC can offer public bodies information, advice and support in order for them to fully understand their responsibilities regarding the new Duty. SEDEC can also assist organisations to draw up their Disability Equality Scheme and monitor their progress. 

Through SEDEC, subscribing public bodies will have access to relevant, up to date information gathered through consultation and audit processes as well as professional advice and guidance to enable them to meet the standards through publications, events and an ongoing dialogue.  

SEDEC will be made up of Disabled People from across the South East who are well informed about the issues and the Social Model and will be setting the standard for Disability Equality in the South East. SEDEC also offers an opportunity for Disabled People to become involved by offering Disability Equality Training and a chance to be part of the council. Ian Loynes, Chief Executive of Southampton Centre for Independent Living said ‘ SEDEC will be an opportunity for Disabled People to lead the way in achieving true Disability Equality’.

There is still time to register to attend SEDEC’s launch event ‘Ten Years On’ at The HG Wells Conference Centre in Woking, on December 4th, giving public bodies and Disabled People a chance to reflect upon what has been gained since the implementation of the DDA and what we hope to achieve in the future with the new duty.

The keynote speaker will be Caroline Gooding who is Director of Legislative Change at the Disability Rights Commission. Caroline is responsible for advising on key long term cross cutting disability issues, as well as the overall impact of the Disability Discrimination Act.

Conference participants will also hear froim Disabled People across the region about the impact that the DDA has had on their lives and what they hope to see happen in the next 10 years.It will also be an opportunity for public bodies to share best practice.

Whether you are a Disabled Person interested in getting involved with SEDEC or you work for a public body and want to find out how SEDEC can help you, it will well worth attending.  You can register on the SEDEC website or for more information, you can call Amanda on 023 8020 2650.  

This week, Heather Mills McCartney was back in the news claiming she would rather lose all her limbs rather than go through another divorce. This soundbite was designed to create maximum media interest but how will it be interpreted and does it portray a positive or negative image of impairment? 

On the positive side, you could interpret Heather’s comments as showing a woman who has come to terms with acquiring her impairment and does not see it as limiting her ability to live a fulfilling life. Isn’t this the view that Disabled People have been campaigning for the whole of society to adopt? 

On the negative side, however, these comments could be seen as trivialising both the physical and psychological aspects of having a limb amputated. Heather Mills McCartney is quoted as saying ‘if your limbs are chopped off you go, OK, you get another limb and there’s light at the end of the tunnel.’. This may be her experience but I know many people who have experienced difficulties after an amputation, particularly with having a prosthetic fitted or getting ‘phantom pain’ from the missing limb. For many people it is simply not the case that they just ‘get another limb’. 

My own opinion is that this comment was a calculated ploy to try and win the media battle in Heather’s divorce to Sir Paul McCartney and did nothing to further Disabled People’s continuing fight for equality.  Let us know your views on this issue.          

Hampshire Adult Services recently decided to change its charging policy, particularly for Direct Payments users who employed their own personal assistants. Until April 2006, Direct Payments users in Hampshire had the choice as to how they would be charged. Scheme A paid users a flat hourly rate net of a flat charge that was the same for all users. Therefore no financial assessment was required. Scheme B primarily used by users who wanted to contract with an agency, paid users a flexible hourly rate, normally related to the cost of the agency.  Users of Scheme B were required to have a financial assessment. 

Despite considerable resistance from users and carers, Hampshire Adult Services decided that they would effectively abolish Scheme A thus forcing users to all agree to a financial assessment. Users could obviously still use Scheme B to employ personal assistants and / or use an agency.

Hampshire Adult Services further complicated matters by adopting some changes to their charging policy in July 2006 and other changes would be made in January 2007. It was initially hoped that the Hampshire Financial Assessment and Benefits (FAB) team would have completed all the financial assessments for existing Direct Payments users by September 2006. However it is thought that only about 25% of financial assessments up to November 2006 have been completed.

Given the difficult history and nature of the charging policy, it was almost inevitable that there would be some complaints however the volume and nature of complaints, received by HCIL, HCODP, SCIL and others is exceptional. These range from extreme annoyance, anger through to enraged distress. No one like the policy but current complaints are about the practice, in particular the FAB team, and the process.

In light of these complaints, HCIL has written to Hampshire Adult Services raising the following points:

HCIL question the validity of a prescribed list of disability related expenditure and allowable costs.

HCIL question the abrupt nature of the cessation of payments; that is ‘with immediate effect’.

Two issues arise: Is it fair that some people have already had their payments cut whilst others have yet to be assessed?  Would it not be more equitable if the result of all financial assessments took effect from a single given date, for example 1st January 2007?

Further, the financial assessment of some direct payments users can result in very changed financial circumstances that could take time to accommodate, given the sums of expenditure possibly involved and existing employment contracts with staff.  No consideration appears to have been given to the possible consequent alarm and hardship caused by ‘immediate cessation’ of financial support.  Surely a two month notice period is the very least one could reasonably expected.

There is no formal opportunity or mechanism for social services to learn what clients feel about the process as the FAB team are part of the County Treasurer’s Department and not Adult Services.

In conclusion, HCIL are requesting that when people are contacted to arrange a visit from a FAB Officer the letter should include a copy of any previous assessment and the option of receiving:

A copy of SAS 10 indicating that this is the basis of the assessment

A copy of ‘allowable costs ‘

A name and phone number clients can talk to about an assessment

The letter confirming the visit should state that the FAB list of disability related expenses and allowable costs are only indicative and not exhaustive. Indeed any claim of disability related cost (by definition as per Fairer Charging) will be considered especially if supported by confirming evidence.

After the assessment a copy of the completed assessment form SAS 10 is sent to the client.

HCIL ask that measures are implemented to ensure that clients comments and responses inform social services policy and practice. HCIL are also asking Hampshire Adult Services to reconsider their present implementation policy and make allowances to accommodate concern for parity of treatment and giving time to make changes

SCIL fully supports HCIL’s efforts to ensure that the charging policy is implementated in a fair and equitable way and that Direct Payments users are provided with all the necessary information needed before, during and after the financial assessment.

If you have not yet had a financial assessment, we strongly advise you to speak to your Direct Payments Support Worker at SCIL who can provide you with useful information in order for you to prepare effectively beforehand. They can be contacted on 023 8033 0982 or email directpayments@southamptoncil.co.uk 

BT, Flybe, Southampton Solent University and Hampshire Constabulary are just some of the winners of this year’s SCIL Disability People’s Business & Community Awards 2006 – organised by the Southampton Centre for Independent Living (SCIL). The awards’ main sponsors were SEEDA (South East England Development Agency) and HSBC Bank PLC.

The Awards Ceremony, held at the Rose Bowl on 16^th November and presented by TV News Presenter Debbie Thrower, was aimed at mainstream companies in Hampshire and the Isle of Wight that have shown that they are continually striving to provide an inclusive service to disabled people within the community.

The winners of the Disability Equality Awards were as follows:-

Entertainment & Leisure: Chamberlayne Leisure Centre

Hospitality: La Vista Restaurant

Transport: Flybe 

Services & Utilities:BT 

Public Services:Southampton Solent University

Equality Achievement Award for Employment: Civil Service (Royal Navy) 

Award for Outstanding Equality Achievement: Hampshire Constabulary (PLOD scheme) 

Award for Outstanding Newcomer: LA Fitness  

Hampshire Library Service also received a ‘Highly Commended’ certificate for their efforts to make their mobile library fully accessible. 

One of the most popular choices was the ‘Judges Award for Outstanding Equality Achievement’ which was presented to Hampshire Constabulary’s PLOD (police link officer for deaf people) scheme

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Janet Marshall, one of the judges for the awards, said  “The PLOD scheme in particular is a great example of working to break down the barriers between the police and Disabled People in the community,  empowering Deaf and hard of hearing people and to be able to use services and contribute to the community in a way that in the past has been denied to them.  PLOD set up an excellent and easy to use SMS service in Hampshire which then went on to influence other police forces across the country, giving greater access for deaf and hard of hearing people as well as people with speech impairments.”

Guests at this year’s event were also treated to comedy from Laurence Clark and table magic during their lunch.   Other supporters of the event included South West Trains, Hampshire County Council, B&Q, Southampton City Council, Hampshire Constabulary and the Ordnance Survey. 

In the final report on the European Network for Independent Living conference in Valencia, we report on the work of ECEPA and the Strasbourg Freedom Drive, as well as promoting future European events in 2007.

Adolf Ratzka from the Independent Living Institute in Stockholm spoke about the European Centre on Personal Assistance (ECEPA) project which aimed to create a Europe wide policy on Personal Assistance.

The policy aimed to define what a Personal Assistant is and what are the key elements to any national Personal Assistance model. The key elements are as follows:

1. Eligibility - Eligibility must be granted solely on the basis of a person’s need of practical or, if applicable, intellectual or emotional assistance by others in the activities of daily living. regardless of cause or medical diagnosis of one’s disability, a person’s age, employment or insurance situation and regardless of income or property of the recipient or the recipient’s household or family.

2. Needs Assessment - The needs assessment must: take into account the person’s current whole life situation and enable recipients to take their rightful place in family, neighbourhood and society with all resulting duties and responsibilities including the culturally customary responsibilities within the family for household, care of small children or aging parents, assistance at the work place, during leisure time, outside the home, on travel and during vacations.

3. Appeal Procedure - Clear, inexpensive and effective appeal procedures must be in place to challenge needs assessments, if necessary, in court.

4. Direct Payments, not services in kind - Cash benefits or Direct Payments are indispensable for users’ self-determination. With the funds recipients must be able to purchase services from the providers of their choice and/or employ their assistants, including family members, themselves.

5. Payments’ amount independent of service provider - Amounts are to be based solely on assistance needs and not on the service providers’ identity. Persons who live in the community and employ their assistants themselves must receive payments in the same amount as if they lived in a residential institution or received community-based services.

6. One central funding source - Under the policy one and the same national level funding agency has to cover all recipients and all their activities. Each recipient must not have more than one agency to deal with. In case several sources contribute, one of them is to be the guarantor for the other sources.

7. Payments for personal assistance as legal entitlement - Recipients must be legally entitled to receive payments for personal assistance irrespective of the funding body’s financial situation.

8. 100 percent coverage of personal assistance costs - In order to facilitate recruitment of personal assistants, Direct Payments must cover all costs of employing a person including such costs as union wages, unsocial hours and over time, workers’ social insurance, accident and liability insurance, pension, vacations, maternity leave, sick leave, training (if deemed necessary by the user); the costs of accompanying assistants around town (e.g. for food, entrance tickets, transportation) or when travelling (e.g. for airfare, hotel room, maintenance); payroll administration and audits. In order to enable users to reap the maximum benefits from Direct Payments for personal assistance, benefits must include the costs of user training and peer support.

9. Constant purchasing power of payments -The level of cash benefits must be annually adjusted to avoid purchasing power losses and to guarantee that payments cover the full costs of the assessed number of assistance hours.

10. Recipients are accountable for the use of Direct Payments - Recipients must periodically account for use of funds. Periods should be 12 months or longer.

A pan-European policy on Personal Assistance was also one of the key demands that the Strasbourg Freedom Drive took to the European Parliament in 2005. The other key demands are: Action to address the growing number of Disabled People being institutionalised, More effective representation of Disabled People in European Social Inclusion strategies, The right to gain Personal Assistance services regardless of cost, Promotion of the appropriate implementation of the philosophy of independent living,  5% of Overseas Development Aid to be given to community development projects for disabled people in developing countries, Action to highlight and address the significant human rights abuses that many Disabled People experience and the right to retain personal assistance funding when travelling, regardless of length, or purpose of journey.

Don Bailey from Dublin CIL showed an excerpt of their DVD that they made during the first Strasbourg Freedom Drive in 2003 and informed delegates that another Freedom Drive was planned for September 2007. The Freedom Drive consisted of meetings with local MEPs and a march through Strasbourg to the European Parliament. This is linked with attending the Disability Intergroup with MEPs from across Europe to discuss our key demands.

It was generally acknowledged that the event was very motivating however there was concern expressed that many of the key demands were outside the remit of the European Parliament. Despite this, it was felt important that Members of the European Parliament were aware of the issues as they did have influence over topics such as geographical mobility within Europe.

SCIL are hoping to send a delegation from the UK on the 2007 Strasbourg Freedom Drive, so please get in touch if you are interested in getting involved.

ENIL are also planning another conference in Valencia in April 2007 which will be a good opportunity to try and progress many of the issues discussed and hopefully further the aims and objectives of ENIL. In order to promote discussions between CILs across Europe, ENIL has set up an internet discussion list which it is hoped will help all the countries keep in touch in between the various face to face events and meetings.

The conference in Valencia provided a great opportunity to kick-start the work of the new ENIL Secretariat and hopefully will enable ENIL to take a strong lead in developing Independent Living policies across the whole of Europe. 

This is the second in our series of articles covering the European Network for Independent Living (ENIL) conference which was held in Valencia in November 2006. The first article can be found here. 

Vibeke Melstrom and Knut Flauum from ULOBA in Norway traced the history of the Disability Movement through a lively presentation combining archive photographs with popular music spanning the last sixty years.

When Rosa Parks refused to give up her seat to a white man on a bus in 1955, she cannot have imagined that years later she would be regarded as the ‘Mother of the Modern-Day Civil Rights Movement’. In 1972, Ed Roberts founded the first Centre for Independent Living in Berkeley, California. In 1990, the Americans with Disabilities Act was signed into law by George W. Bush. In 1991, ULOBA was founded in Norway by five wheelchair users. ULOBA was based on the Independent Living philosophy and was set up to combat the discrimination of Disabled People. In 2000, all municipalities in Norway had a mandatory obligation to provide Personal Assistance services. In 2003, the European Year of Disabled People and the first Strasbourg Freedom Drive was held to highlight to members of the European Parliament, the issues faced by Disabled People.

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In 2006, over fifty years after Rosa Parks refused to give up her seat, many Disabled People are still unable to get on buses in Europe.

Gordana Rajkov from Serbia introduced a new video that has just been produced in Serbia about their pilot ‘Personal Assistance’ project. The video called ‘The Idea Whose Time Has Come’ features some of the participants of the scheme tell their own stories about how Personal Assistance has changed their lives. One participant spoke about how it had enabled her to visit her father’s grave for the first time. Other participants spoke of how they no longer had to rely friends and family to do basic living tasks. It was striking how similar the video was, to videos regarding personal assistance from other countries. It demonstrated that people all across Europe face the same barriers to living independently and the majority of governments just expect the family of the Disabled Person to meet all the shortcomings of the statutory ‘care’ system.  

Colin Barnes spoke at length about the work of the Centre for Disability Studies at Leeds University, particularly highlighting their archive of several hundred articles and books related to Disability Politics all available online. Colin outlined the development of Independent Living in the UK and the history of the Disability Movement. He noted that there were many organisations run and controlled by Disabled People but that they all suffered from short term funding which stunted their ability to develop.

He always warned that many other larger organisations were latching on to the language around Independent Living and were stealing work away from the smaller locally based CILs. Worryingly, many other countries were experiencing similar problems, particularly in regards to winning funding applications.

Colin told the conference that one of his current pieces of work was to try and map where all the true CILs were within the UK, particularly as the UK Government aim to have a Centre for Independent Living in each local authority by 2012. Colin also distributed two of his papers ‘Disability Studies:what’s the point?’ and ‘Creating Independent Futures’. 

The final report from Valencia is here

Thirty three years ago on November 5th 1973, I was born in Frimley Park Hospital. It was immediately obvious that I was disabled and my mother was advised on more than one occasion to leave me at the hospital and forget about me. As is very common, doctors told my mother a series of negative predictions about my future. Apparently, I would be blind, deaf, have epilepsy, never be able to talk or communicate. They even used the classic ‘he’ll be a cabbage’ line.

So why am I telling you all this? Last Sunday was my thirty third birthday and flicking through the papers I was horrified but unfortunately not that surprised to read that the Royal College of Obstetricians and Gynaecology is calling on the health profession to consider permitting the euthanasia of seriously disabled newborn babies. Apparently the college is arguing that “active euthanasia” should be considered for the overall good of families, to spare parents the emotional burden and financial hardship of bringing up the sickest babies.“A very disabled child can mean a disabled family,” the report says.

One contributor to the Sunday Times article, John Harris, a member of the government’s Human Genetics Commission and professor of bioethics at Manchester University argued “We can terminate for serious foetal abnormality up to term but cannot kill a newborn. What do people think has happened in the passage down the birth canal to make it okay to kill the foetus at one end of the birth canal but not at the other?”  The saying ‘two wrongs don’t make a right’ springs to mind. There seems to be very little appreciation amongst the medical profession that people with impairments can enjoy a good quality of life and contribute to the richness of the society in which we live.

The Nuffield Council of Bioethics are publishing their report ‘Critical care decisions in fetal and neonatal medicine: ethical issues’ on the 16th November and it will be interesting to see whether the opinions of Royal College of Obstetricians and Gynaecology are echoed in the report. Unfortunately I am unable to attend the launch of the report however as always I’ll keep you posted through the blog.

In 1973, I had a chance to prove the doctors wrong. In 2006, disabled babies may no longer be given that chance.

Valencia in Spain was the location for one of the largest gatherings of Independent Living activists in many years. Organised by the European Network for Independent Living (ENIL), delegates from 14 countries met for 3 days between the 2nd and 4th November 2006 to discuss a whole range of issues regarding independent living. In this short series of articles we hope to give you a flavour of some of the issues that were discussed and encourage you to get involved in future events that are planned in 2007

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Valencia is the 3^rd largest city in Spain after Madrid and Barcelona and will play host to the America’s Cup in June 2007. Valencia is a city of two halves with a beautiful ‘old’ town and a more modern commercial area. Between these two areas, a grand and imposing City of Arts and Sciences has been designed by Santiago Calatrava which comprises of an IMAX cinema, science museum, a large oceanarium and a new opera house reminiscent of Sydney Opera House.  

The conference was entitled ‘CIL = Empowering: We Make The Change’ and several influential speakers from the Independent Living movement spoke, including Adolf Ratzka and Colin Barnes. The meeting was opened by Alicia de Miguel from the Ministry of Welfare of the Valencian Regional Government who was instrumental in securing a Secretariat office for ENIL in Valencia for the next year. Alicia de Miguel confirmed the Valencian Regional Government’s commitment to the independent living philosophy and hoped to work with ENIL to promote this cause.

John Evans, the President of ENIL, welcomed the setting up of the Secretariat in Valencia and said ‘For the European Network on Independent Living (ENIL), the main aim of this meeting is enhancing the European CILs’ network, in order to find common strategies to develop Independent Living and to strengthen the IL movement in Europe. That’s why ENIL has brought together those IL activists working in CILs from all over Europe: to exchange ideas, experiences, and good practice. It is necessary to strengthen our links now when the Commission is keen on supporting and developing community living based alternatives and Independent Living as an alternative to institutions. It is also good at the moment to be united when many EU member states are cutting back the resources supporting disabled people led organisations.’ 

Representatives from ULOBA, based in Norway, presented a new book that they had commissioned called ‘Folk’. This book contains strong images of Disabled People along with quotes from people committed to human rights for all

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You can see a preview of the book here  

Javier Romanach who is the Co-Founder of the Independent Living forum in Spain, introduced a new concept that they are working on in Spain for ‘Functional Diversity’. ‘Functional Diversity’ is a different way of looking at the issue of impairment. There are a range of aspects to the way people function. These include Aesthetic, Physical, Sensory, Social, Emotional, Cognitive and Spiritual. Each of us have a different capacity to function in each of these aspects, for example, an athlete or dancer may have a very high physical capacity but an average cognitive capacity. A scientist may be the opposite. Similarly a person labelled as having impairment may have low capacity in a certain aspect but high capacity in another aspect of function. Functional diversity is therefore a way of thinking that takes away the boxes of “impaired” and “normal”. It allows all people to share in the complex array of human function and benefit from their strengths.

Javier’s presentation raised a number of issues. Some delegates thought that the concept was putting the focus back on the individual rather than concentrating on changing society. Other delegates voiced the concern that it was harking back to the days where people argued that everyone has a ‘disability’ in one way or another. This of course denies the impact that society’s reaction to an impairment has on whether a person is labelled as ‘disabled’ or not and thus discriminated against.

This discussion illustrated very well the very different cultural backgrounds the countries represented came from. Throughout the three days, there was much discussion around language – functional diversity vs. impairment, citizens vs. users, Disabled People vs. People with Disabilities. Despite many common themes developing throughout the three days, the language of the Disability movement remains a highly debatable issue.

More news from Valencia can be found here