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

Baroness Jane Campbell has called for Personalisation and Social Care to been seen as a human rights and equality issue. In a powerful speech to the Institute for Public Policy Research, she says that funding for older people, support for carers, and promoting independent living needs to be one debate.

Echoing CSCI’s recent report on social care, Baroness Campbell questioned the tightening of eligibility criteria by local authorities - ‘If disabled people cannot access services unless they have the highest level of need, then all the empowering transformed delivery in the world, will not change the inequality experienced by people and families who require public service support to participate equally in society.’ 

She added ‘When we debate the future of adult social care, we are talking about people’s human rights and equality, not just for the person requiring the support, but for those with whom they share their lives.’

Here at SCIL, we believe Self Directed Support can only be fully utilised if people receive support and advocacy in order to make informed decisions.

Jane seems to agree. She said ‘As Demos have pointed out, the very advantages that personalisation and coproduction potentially offers also contain the seeds of building further inequality and disadvantage: “there will be huge scope for self-directed services and personal budgets. These pay-offs will particularly apply where people can mobilise their own knowledge and resources to make the service more effective”.  “For those who do not — the most excluded in our society, the people who need it the most, will lose out”.

We highly recommend blog visitors read the complete speech on the Equality and Human Rights Commission Website.

Just before Christmas, a key case about Disability rights and changes in eligibility criteria was decided in the High Court. The judge found a local council had acted unlawfully when introducing its new policy because it had breached its duties under the Disability Discrimination Act.

The case, brought by the Public Law Project (PLP) on behalf of three service-users in Harrow, was a challenge to Harrow Council’s decision in July this year to restrict the support services it currently provides to people with critical needs only, withdrawing support from those who had substantial needs.The latter category includes those whose independence is at substantial risk if their needs are not addressed, including those who have only partial choice and control over their immediate environment, an inability to carry out the majority of personal care or domestic routines or an inability to maintain the majority of social support systems and relationships.

Local groups had grave concerns that such a restriction in services would leave hundreds of Disabled and Older people without essential support.

In the High Court, Judge David Mackie QC held that the decision to introduce the new policy was unlawful as the Council had failed to meet its duties under the Disability Discrimination Act. He described how the Council had failed to have due regard to the need to eliminate discrimination against disabled people and to promote equality of opportunity: “there is no evidence that this legal duty and its implications were drawn to the attention of decision-takers”.

The Council will now have to reconsider the issue ensuring that they meet this fundamental duty and protect the rights of disabled people when deciding whether to go ahead with the new policy or not.

The full court judgement can be read at http://www.bailii.org/ew/cases/EWHC/Admin/2007/3064.html

In a much anticipated move, it has finally been announced that Self Directed Support via an Individual Budget will be offered across the UK to every Disabled adult and Older person who is eligible for social care services.

Currently just over 100 local authorities are piloting self directed support, however from April 2008, all local authorities will have to offer this. The individual budget could either be paid directly to the individual via a direct payment or the council may still hold on to the money but  an individual would have more control over when and how the council spend that money.

The media over the weekend very much focussed on the fact that older people could now be given cash to purchase their own support. The fact that Older People have been able to get Direct Payments since April 2000 seems to have passed journalists by.

Southampton will be rolling out their self directed support scheme  from January 2008 and SCIL have now taken on a support broker who will work with people with physical impairments and older people who want to switch to an individual budget.

One confusion is the number of names this particular scheme seems to have. Individual budgets, self directed support, In Control, and personal budgets are all being used to describe the same thing. SCIL has decided to adopt the term self directed support until a consensus is agreed nationally.

We will be putting a lot more information on the blog over the coming months but if you want to know more, particularly about plans in Southampton, then please contact Jeremy Long Price, our new Self Directed Support Broker on 023 8020 2642 or email Jeremy@southamptoncil.co.uk

P.S. We added a poll, just for fun, on our message board where you can name this latest government policy. Go on, Vote Now!

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.

Our Lives, Our Choices is the campaign for the right to independent living. The campaign is being supported by many organisations such as NCIL, as well as trade unions, MPs and Peers. As part of the campaign, a National Rally is being held on 18 June between 12 and 2pm at 10 Downing Street in London.  

At the rally, stories of Disabled People who are struggling to live independently will be presented to the Prime Minister. Disabled People will be demanding legislation that guarantees their right to the support they need to live free and equal lives. 

The Disabled People’s (Independent Living) Bill is a private member’s bill sponsored by Lord Ashley of Stoke and Roger Berry MP. If passed, the Bill would give Disabled and Older People clear legal rights to the services and support needed to control their own lives and participate in society.  

Even if you cannot come to the rally, you can still support the campaign. You can request a ‘Our Lives, Our Choices’ campaign pack which will tell you everything you need to know about the Independent Living Bill. It also contains model letters that you can send to your MPs and local authority and tips on how to get the local media to talk about the campaign.

For more information email policy@ncil.org.uk or look on the website www.ncil.org.uk

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.

Last week the Commission of Social Care Inspection published its annual report into the state of social care in England. It found that more services are meeting minimum standards, but despite spending more, councils are tightening local rules about who qualifies for state-funded social care.

This means that more and more older and disabled people either have to find and pay for their own support / assistance or rely on family members or friends.As local councils support fewer people, informal unpaid carers have to fill in the gaps, with inadequate support structures to help them and no system in many areas to help people find the services they need.Those who have no one to rely on may have to make do without support until their situation becomes critical.

CSCI Chair Dame Denise Platt said:“Social care services in England are gradually getting better, but only for those people who manage to qualify for help. As councils face an increase in the number of older and disabled people and in the costs of care, many have responded by raising the threshold people have to pass before they are entitled to a council-funded service. As a result, irrespective of the quality of social care services, fewer people are receiving services.Those who do qualify for care have a high level of need.”

“The options for people who do not meet the criteria set by their local council are limited. In some cases, people rely on friends and family members. In others, they pay for their own care. Some people have no option but to do without.“

“It is also clear that external pressures on the sector are hindering progress in making services better for the people who use them. In particular, NHS budget deficits in some areas are putting a strain on relationships at local level and potentially undermining essential partnerships in both adult and children’s services.”

The report also found that although there has been a substantial increase in the numbers of people using direct payments, these are very small compared to overall numbers of people who use social care services. Pilots for individual budgets are shifting traditional views on how to provide support, but lessons are yet to be learned prior to any national roll-out. Most people, including those who fund their own care, are not yet in a position to exert pressure on the care market and alter the local ‘menu’ of services.

The report had particular concern for the various groups including:

1. Those people who are not using services arranged by the council but who seek support and good information about what may be available. As yet, there is limited evidence as to whether people are successfully directed to alternative and appropriatesupport or properly informed about the options open to them.

2. Carers, unpaid relatives and friends who are bearing the costs of ever-tighter eligibility criteria for services.

3. People who have little, if any, choice and control over the services they use. There are still too many people who are offered little, if any, choice of services; nor do they have any choice as to who comes into the privacy of their homes to provide assistance and when and how support is provided. 

CSCI have pledged to examine the impact of tighter eligibility criteria over the next year and SCIL welcomes this move.  This report is yet another signal that both government and society need to seriously examine the future of social care within Britain before things get any worse.