Southampton Centre for Independent Living

Ian Loynes and Robert Droy from SCIL recently attended the first session of the Hampshire Personalisation Commission. Throughout the day, we discussed with members of the audience how they felt about the Commission and their observations of the first session.

Firstly without wishing to be overly negative, the format and acoustics of the venue was not particularly accessible for many of the participants. There was no sign language interpreter at the session but we presume this would have been provided if an participant had requested it. We were also disappointed with the lack of diversity amongst both the commissioners, witnesses, and the audience in general. ‘White, middle aged, and middle class’ was one comment we heard.

Despite the session being entitled ‘People and Carers’, out of the 7 people who gave evidence, 3 people were actually ‘professionals’ who gave lengthy presentations which were followed up by questions. Their evidence, whilst useful, may have been better suited to a later session.

In contrast, the ‘people’ and ‘carers’ were asked to give very brief presentations with no opportunity for the commissioners to question them further. We feel this was a missed opportunity to really capture from the ‘users’ themselves why personalisation was so important. This part of the evidence was summed up by the Commission Chair as ‘moving’ and ‘uplifting’. Whilst these comments were well meaning, they were construed by many as slightly patronising and not viewing the evidence on an equal level as the evidence given by the other witnesses.

The round table discussions in the afternoon were found to be much more successful but unfortunately were only open to a ‘select’ group of invited guests. Some of the common themes have however been summarised in a document on the Hampshire Personalisation Commission website, along with much of the other evidence and presentations at each session.

The next session is on June 12 and you can apply for tickets for that session until May 20 by visiting the website or by calling 01962 833 040. Leave your name, telephone number and address and they will post an application form to you

Thanks to NCIL for passing on this information.

The Coalition on Charging is a group of organisations chaired by the National Centre for Independent Living (NCIL). The coalition was established to campaign against the current system of charging for community care services.

The Coalition members include: NCIL, Age Concern, Scope, the Multiple Sclerosis Society, Disability Alliance, Alzheimer’s Society, People First, Mind, Radar, the Alliance for Inclusive Education, Counsel and Care, United Kingdom Disabled Peoples Council (UKDPC), Action for Blind People, Royal National Institute for the Deaf, Arthritis Care, British Polio Fellowship, Carers UK, Equalities, Help the Aged, the Parkinson’s Disease Society, Mencap.

The Coalition is writing an up to date report, highlighting the current situation with charging for care, to ensure that the issue is on the government’s agenda when looking at the future of social care.

Our survey:

As part of the report we want to include feedback from people who are affected by charging. We have developed a survey that will be used to help the Coalition on Charging produce good information.

The report is aimed at the Department of Health and Government. A Government consultation (‘green’) paper on reform is due out sometime in 2008.  The Government has said that it ‘believes that there are real opportunities for reform within a system that shares the cost between the individual and the state’.

However, in our view, it is very important that they look at the effects on people of the current charging system and hear the views of people who are currently being charged for their support.

In order that we can include your views please can you respond to this survey by May 1 2008.

Please fill in the question on personal details. It is important for us to know your age as adult services are often provided for ‘adults’ and ‘older people’. We will not pass on any personal information and will make all responses anonymous in the report.

The Coalition has one set of survey questions for individual people who need support and their carers. There is a separate set of survey questions for organisations representing people who need support and representing carers. Please fill in the right survey.

You can download them here:

charging-survey-for-individuals

charging-survey-for-organisations

If you are involved in a forum or network, if you were able to discuss this issue that would be very useful.

The survey is for all adults in England who use (or have used) local authority social services for support in their own home. This includes people who use (or have used) direct payments. It does not include people who use residential care services.

This survey is aimed at all disabled and older people who use community care services.

We apologise for the short amount of time given to return the survey but we hope you will be able to give us your views.

Please send your completed survey by May 1 2008 to NCIL,  Fourth Floor, Hampton House, 20 Albert Embankment, London SE1 7TJ or to policy@ncil.org.uk or fax to 0207 587 1663

As previously reported, Hampshire Adult Services with the support of Children’s Services is undertaking a review of Direct Payments. Hampshire state the the purpose of the review is to ‘make it easier for people to obtain and use Direct Payments, while at the same time making sure that Hampshire County Council meets its duty of care for individuals and its legal obligation to account for the way in which public money (Direct Payments) is used.’

Hampshire believe that the proposed changes presented in the consultation document are the best way of improving Direct Payments.These proposed changes relate to Self Assessment, Direct Payments Risk Assessment, Support Agency Role and Outcome based care planning. 

The full consultation document and questionnaire can be found here. 

Following a number of concerns raised by SCIL, HCIL and Carers Together regarding the accessibility of the document and questionnaire, Hampshire have organised 3 workshops around Hampshire for users to give their views.

According to the website, ‘The workshops will provide people with information about the proposals and an opportunity to discuss them in small working groups. The information will be explained and people will be able to ask questions so that that can get a clear understanding of the proposals. People will also have time to talk about their personal views during small group sessions and be able to put these forward via the group or by completing the questionnaire.’

The workshops are from 10am to 1pm on the following days:

Tuesday 16 October at Horndean Centre (Horndean Technology College)

Wednesday 17 October at The Maltings Centre – Centennial Room in Alton

Friday 18 October at Wells Place Centre in Eastleigh

Places are limited to 60 people per venue so you must book in advance by emailing the Adult Services Department or contacting the Direct Payments telephone helpline 01962 833039 

HCIL and HCODP are also hoping to host a joint meeting regarding the consultation in early November – details to be confirmed.

The consultation runs until Friday 14 December.

With SCIL’s AGM just around the corner, SCIL are pleased to release their annual report for 2006/2007. As you will see, it has been yet another rollercoaster of a year with some low points but also some real signs of optimism for the future.

We are just about to start phase 2 of our redevelopment of Unity 12. Once completed, we will have fully accessible conference room facilities, in addition to extra office space that will be let to like-minded organisations.

Anyway, I don’t want to reveal all the hidden gems you will find in the annual report. Give it a read, you might find it more interesting than you thought - just click the link below.

SCIL’s Annual Report 2006 - 2007

The above file is a PDF file so you will need Adobe Acrobat on your computer and it may take a few seconds to download.

On February 14, the Disability Rights Commission launched what will probably be its last major inititative before it is merged into the new Commission for Equality and Human Rights in October 2007.

The Disability Agenda sets out what the DRC consider to be the major public policy challenges that Britain is facing and the action required to meet them.  These include promoting a culture of human rights and equality, bringing an end to child poverty, increasing life chances through learning and skills, ending poverty and widening employment opportunity, increasing participation in public, civic and community life, developing a social care system fit for the future, tackling health inequality, meeting the future housing challenge and building stronger safer communities. 

All very worthy aims and remarkably similar to the 12 basic rights that SCIL adopted 20 years ago. Although at first glance, the agenda just looked like a bunch of worthy aims but with no substance, the DRC has drawn up a list of recommendations for each aim, which hopefully both central and local government as well as others will consider when drawing up their future strategic plans.

It is still unclear how much attention the new Commission for Equality and Human Rights will give to disability issues but hopefully the Disability Agenda will be adopted by the new Commission and others in an effort to effect change over the next 10 years.

In the second article of our series about inclusion, John Browning gives his personal view on inclusion. John is the Chair of Governors at a school for children with learning difficulties and works at SCIL as a Direct Payments Support Worker…..

 The debate about whether, or not, to include children with moderate learning difficulties (MLD) in Mainstream Schools is one that has exercised a wide variety of minds. From educational psychologists to parents, from teachers to people who work within the disability movement all have asked if is it better to include these pupils in  main stream education or in special education.

One of the reasons this has become such a hot debate is that people in favour of including these children in mainstream schools tend to add a rider to their view. They say that given the appropriate facilities and money to make it viable it would be the appropriate way to educate kids who are currently educated in Special Schools. However such a view could be used to support virtually any point of view. The status quo is what schools have to work with. If the debate is that more money should be made available to make inclusion viable then that is a different position. But until the necessary resources are made available, if ever, it is not an appropriate way to educate those pupils who after all have special, or as I would prefer to call them individual educational needs, I am totally opposed.

I would not wish to see kids with Autism, or one of the other impairments that cause learning difficulty, placed in schools that would cause them to feel different to the others kids with whom they were educated. From past experience it is almost certain that this would result in them being, at best outcast, or worse bullied. 

To seek to include children in mainstream schools with the system as it now would create enormous difficulties. It is almost certainly the case that both those with, and without learning difficulties would be disadvantaged by an attempt to educate them all together.

Those children educated in Special Schools benefit from a much lower staff pupil ratio than those in mainstream. Those teachers are specifically trained in providing the appropriate teaching methods to enable young people with learning impairments to achieve their potential in a more conducive environment. In addition all classes have trained learning support assistants.  

The truth is that the required level of funding to make inclusion viable is very unlikely ever to be provided, and without it inclusion is not a desirable proposition. Those who support including children with learning impairments in mainstream schools are unlikely ever to see that come about because it would not be a priority for any government.

So the answer to the question, “To include or not to include?” Is that until sufficient funds are made available, inclusion is not viable 

We are very aware that the blog is currently very wordy so we are hoping to include more pictures, video and music in the near future so…….

While surfing around this bank holiday weekend, I came across this video and music montage which although rather sentimental, has a good message.

A Life Worth Living

Let us know what you think and if you come across anything that might be of interest to the blog, then please contact us.

The biggest problem when writing a blog is to start getting too obsessed with how many people are reading it. This trap I have already fallen into. No sooner have I grabbed my first mug of coffee in the morning, then I am racing off to my computer to see how many hits I’ve had on the blog overnight. Just like in the world of television, you are then tempted to chase ratings. And what is the number one way to get ratings? Unfortunately its not to discuss equality or discrimination but to write about Sex.

Sex is something that is now discussed and debated ad nauseum. Even my mother discusses it with me - which is frankly wrong, but that’s enough story.

However there is still a real taboo surrounding sex and disabled people. Some people feel we shouldn’t do it. Some people even think we shouldn’t think about it. And a lot of people think that we should definitely not be doing it with non-disabled people.

Unfortunately this is actually making some Disabled people think that sex is ‘dirty’ or ‘disgusting’ and they do not feel able or supported to express their sexuality. A few weeks ago I watched a programme on Channel 4 about a dating agency specifically for people with learning difficulties. Before watching the program, I was not entirely happy with the concept, however the program convinced me that the agency was fulfilling an important role. The agency was set up and run by two women with learning difficulties who had found dating a minefield. The programme illustrated very well how family and ‘care staff’ needed to feel comfortable with the relationship in order for it to work. My favourite part was when one of the couples featured, felt they had to go and ask the chaperone from the agency whether they were allowed to kiss goodnight.

Another dating website I ventured upon whilst researching this blog, is called Whispers4u. They seem to be hedging their bets with their terminology as the site uses ‘differently-abled’, ’disabled’, ’people with disabilities’ even ‘handicapped’. Now purely for research you understand, I decided to join this website and although the target audience is obviously disabled people, I was surprised how many non-disabled people were on there and seem geninuely interested in chatting. Most of the people I spoke to, either already have close disabled friends or family members or they had worked with disabled people in the past. (Anyway, I got a date out of it so I’ll let you know how it goes - then again maybe i won’t).

Disabled People may need support to explore their sexuality and this may be even more important if you are a Disabled Gay Man or a Disabled Lesbian. Regard is a national organisation based in London to support Disabled People who are Lesbian, Gay, Bisexual, or Transgender. Unfortunately, due to funding cuts, they have slimmed down in recent years, however they are still a good source of information and support.

SCIL currently have 12 basic rights which we feel are necessary in order for Disabled People to fully participate on an equal basis within society. We are now considering whether to add a 13th basic right to cover relationships and sex. Your comments are always welcome.