Created on 16 December 2015

For the last 5 years campaigners have been fighting against the closure of the Independent Living Fund.  Disabled people were worried that ILF monies would be swallowed up by local councils who would reduce services or just count the ILF monies as part of their own income.

In Scotland, it was thought the campaign was won with the launch of a new Scottish Independent Living Fund in May of this year.

But this information from Glasgow indicates that at least one council is treating SILF funds as income to meet needs the council would normally fund.

As a result individuals are losing control over money that the Scottish Government says should be theirs to spend on their care as they want.

We need clearer rules about how local authorities treat SILF monies.

 

Councillor Cunning’s Response

Created on 17 December 2014

Dear Mr Hood,

I refer to your recent email entitled “A return to institutional care for adults with learning disabilities in Glasgow?”. Your email raises two fundamental concerns regarding the current tendering process for the provision of residential accommodation for adults with learning difficulties which could cater for up to 20 individuals.

Firstly, can I emphasise that this in no way represents a reversal of the progressive, democratically established, learning disability policy of supporting individuals to live independently within the community. Specifically, there is no attempt to redirect anyone from the community into residential care.

This tender relates to a reconfiguration of a comparatively small level of provision of existing residential care to this client group; i.e. the individual service users in scope for this revised provision are, in the main, already in residential placements. The current provision is outwith the city boundary and there are significant benefits for the individuals concerned, as well as their family and friends, if they were supported within their home city.

It is also recognised that there will be future circumstances where as a result of, for instance, diminishing health and increasing needs that it is simply no longer appropriate for some individuals to be sustained in individual placements. This may be because the appropriate form of care cannot be provided in the person’s home (e.g. nursing) or that, following individual reviews which identify increasing need, the significantly increasing costs of supporting such placements does not provide best value to the council or to the individual.

The award of any contract of significant value requires Executive Committee approval; on the conclusion of this tender exercise, should an award be recommended, it will be brought to Executive Committee for a final democratic decision.

You also appear to suggest that every instance of group living/residential care is, by definition, a bad thing. Having worked as a Nursing Assistant at Ladysbridge Hospital near Banff, (the North East equivalent of Lennox Castle,) and having served on the Board of an organisation supporting adults with learning disabilities to live in the community, I have first hand knowledge and a deep personal commitment to independent living. You cite a number of examples of some of the terrible failures in institutional and group living. While I would fully support your condemnation of these failures I am also aware that there are circumstances and numerous exemplars of both the appropriateness and considerable success of group support for a small proportion of adults with learning disabilities.

The service envisioned under the current tender process does not equate to large scale institutions such as Lennox Castle nor should it be tarnished because of cases such as Winterbourne which, though thankfully rare, represent a failure of the service rather than the concept.

This council remains committed to supporting all our citizens, irrespective of age, disability or background to live as independently and freely as possible within the community. We are also committed to ensuring that, to the full extent of their capacity, people with whom SW engage have genuine choice. Neither of these commitments in any way precludes the provision of well run and properly provisioned group support in a small number of appropriate cases.

I trust you will find this clarification of the position helpful.

Kind regards,

Cllr Malcolm Cunning

 

Our first letter to all Glasgow Councillors

Created on 17 December 2014

Dear Councillor Cunning

Last week following the publication of the Bubb report into plans to end institutional care following the Winterbourne scandal the UK government had to defend its failure to help people with learning disabilities leave institutional care and live in their local communities.    In England more people with learning disabilities are entering hospital and other forms of institutional care than are leaving.  In the year to September, 923 people were discharged but 1,306 were admitted.  Norman Lamb PM, the Minster for Care admitted on the radio that the problem is that local authority provision for people living in independently was falling behind.  But he insisted that money was not the problem, after all these places were funded by the NHS – surely the money could be used better in the community.

Scotland is not immune from this.  Many people with learning disabilities are still in institutional care north of the border and many more travel south to hospital and services in England.  But a new development worries us considerably.   It was with surprise that we found that Glasgow City Council Social Work Services are planning to commission a new 20 bed Care Home for people with learning disabilities so that people leave their local communities and live in institutional care.

We have looked through papers presented to the City Council’s Health and Social Care Policy Development Committee for this year and can find no mention of this development or any subsequent discussion.  Neither can we locate any mention of it in the publicly available papers from the Personalisation Sub Committee.    I am sure that we must have overlooked some mention of this as surely such an important development cannot be taking place without some form of democratic oversight. 

Glasgow City Council tender documents (attached) call for

“a discrete unit dedicated to the care and accommodation of 20 adults with learning disabilities, staffed on a 24- hour basis, within the geographical boundary of Glasgow. It will compromise living spaces including dining areas, communal areas, and individual bedrooms. It will also have access to outside garden space for residents. The unit will have its own identity, and at very least a door separating the unit from other resources.

“The unit will be staffed 24 hours per day and able to meet the needs of up to 20 individuals over the age of 18 years with Learning Disabilities whose needs are to a level of complexity that cannot be met within a mainstream elderly care home environment.

“Maximum funding of £640(gross) per placement per week is available within this contractual arrangement.  Bidders will require to evidence that the service as described in the service specification will be fully operational by 7th January 2015.”

We are concerned because

  • Large institutional settings disempower people with learning disabilities leaving them more vulnerable to abuse and neglect such as took place in Winterbourne
  • The creation of such large services can allow staff sub cultures to develop that devalue people with learning disabilities
  • Opening such a service in just 6 weeks after the award of contract runs the risk of unexpected problems such as making sure each individual has a proper personalised care plan
  • This service may end up replicating the problems in care home services already used by the City Council such as Collisdene Care Centre which has had a moratorium on placements for over a year.

The Mental Welfare Commission has investigated the experience of people with learning disabilities in care homes of this size or larger. They found that

  • .       People lost their rights and were restricted more in movement and choice than they should be
  • .       Staff often did not understand how they should make sure people consented to medical treatment
  • .       People were often not taking part in their own reviews
  • .       Local authorities often didn’t turn up for reviews or keep an active interest in people
  • .       Many of the homes were institutional in feel and look
  • .       Some people had very limited day activities
  • .       A significant number of people couldn’t get out because of lack of transport
  • .       There was little effort to help people develop friendships outside the unit.

Developing a 20 bed care home is not an alternative way of looking after people with learning disabilities in the community.  It is a return to the old days of large segregated services that have the smell of Lennox Castle and other large hospital based services.

We would urge you to raise this matter within the democratic structures of Glasgow City Council and to find a way of putting this tender on hold before it is withdrawn completely.

Such a development is not what anyone expected as we moved into Self Directed Support.  It is the wrong direction of travel.

All the best

Ian Hood, Coordinator

 

Created on 15 November 2014

The Scottish Independent Living Fund (ILF) is still in the process of being set up.  Self Directed Support Scotland will be hosting the Scottish ILF Development Manager (18 month contract, £50,000  pa), who reports to the newly formed Project Board, which is co-producing advice on the new Scottish ILF arrangements.   The Project Board have recently (mid October) agreed the content of messages to go out to stakeholders, from Scottish Government, to keep everyone informed.  They are currently being drafted in to accessible formats (possibly Easy Read, but if not then certainly Plain English) and there should be something going out to people in the next two or three weeks.

The project board consists of a number of user led disabled organisations such as GCIL and LCIL, The Scottish Government and Cosla.

The current arrangements as we understand it are:

• The entire ILF payments will be transferred to a new Scottish Government Fund from July 2015.

• The actual amount transferred will be the amount still payable on June 30

• This will continue for as long as the ILF remains an identifiable funding element in either the UK government budgets or English & Welsh local authority budgets.

• Payment and contact details for current clients will be transferred and all existing payments will be maintained subject to point 2.

• Payments will probably be made by a new 3rd sector organisation

• No information is yet available on whether “match funding” from local authorities will be required under the SILF arrangements and if so, how much.

• As announced in the Sturgeon Press Release in the spring additional funding of £5.5 million will be made available for new applicants

The question about match funding will be important because without it the ILF money could be swallowed up by reductions in the local authority contribution for  individual packages of care.  But it is also a minefield with currently at least 4 different levels of match funding applying in ILF packages. It will be difficult to implement as it will be hard to prove it’s happening (especially if it’s happening gradually) without some kind of complex statistical calculation and it is not clear what sanction the SILF might have if councils transgress other than withdrawing its own funding (to the obvious detriment of the individual concerned).

The official Government position on the question of match funding is given in a written answer to Jackie Baillie MSP is “The Scottish Government expect to adopt the same existing criteria that is currently in place for existing users of the UK ILF on the establishment of the new Scottish Independent Living Fund by 1 July 2015. The Project Board will make a number of recommendations to Ministers during development and I expect that the criteria will be included within these.”

 

Created on 14 April 2014

Nicola Sturgeon told the SNP spring conference in Aberdeen on Saturday that the Scottish Government would set up new fund to help disabled people, to take the place of the Independent Living Fund, which she said was being closed by the UK Government.

The Scottish Independent Living Fund will support more than 3,000 disabled people, and a £5.5 million investment will mean it will be open to new claimants, as well as those who benefit from the existing scheme.  The new fund will be managed by the third sector.

The UK Government’s support scheme has been closed to new applicants since 2010 and is due to close altogether in June 2015.

The Scottish Government’s version of the fund will come into effect in July that year, subject to the full allocation of funding being devolved.

We will be interested in clarification on how people can be referred to the new fund.  The official press release says that referral will be by local authority social worker.  Given that people may need to have a qualifying level of existing services before they can apply then this may not be a problem but there is a worry that giving the keys to yet another gate to local authorities may lead to consequences that no one expects.

 

Further update on the Scottish position on the ILF

Created on 14 March 2014

Two weeks ago Mike Penning announced the UK government’s decision to go ahead with the closure of the Independent Living Fund from June 2015 for users in England and Wales.  Existing funding would be transferred to local authorities and users would become dependent on local authorities assessment of their need and a subsequent allocation of resources.

The situation in Scotland is quite DIFFERENT.  The funding for existing ILF user will be transferred to the Scottish Government with effect from June 2015 and they have made a COMMITMENT to honour all existing awards for as long as funds continue to be transferred to them.  This means that existing ILF users will be protected in the short term.    Future decisions will depend on financial settlements in the long term  and the current Scottish Government is clear that they intend to offer this protection for as long as possible.

No public announcement has been made by the Scottish Government to this effect as they have not yet been formally told by the DWP of the decision to close the ILF. This formal notice will include details of the proposed financial assessment and having it is essential to making sure that the Scottish Government can carry out their plans. Some scrutiny of this notice will be needed  because the change of dates for the closure of the fund will alter the details of the financial assessment.    A formal announcement will follow in due course.  The hope is this will be no longer than 2 weeks from today.

Meanwhile the previous plans remain ready to go.  The consultation that was carried out last year on the future management of the ILF resources in Scotland is still live and once the financial information has been received then the Minister will consider the analysis of the consultation and the financial information and decide how to go forward.  We can hope to see the consultation responses and the analysis of these first published on the Scottish Government website and hopefully shortly after the Scottish Government’s plans for using any spare ILF money as it becomes available.

We would reiterate that for the short term ILF users in Scotland will have their existing support packages maintained.  

 

Created on 7 March 2014

The Independent Living Fund (ILF) is to close from 30 June 2015, with local authorities taking responsibility for delivering support through the mainstream adult social care system.

Minister for disabled people, Mike Penning, confirmed the new arrangements for the fund, which helps disabled people to live independent lives. The 18,000 current users of the fund in England will now transfer from ILF to the social care system.

Mr Penning said: ‘Our understanding of disabled people has changed over the past 20 years, and along with it there have been significant developments in how we provide social care to disabled people so they can live independent lives.

‘We continue to spend £50bn a year on disabled people and the services provided to them, and as part of the government’s long-term economic plan, we want to make sure that disabled people are given the support that allows them to fulfil their potential.’

He said the Department for Work and Pensions had addressed the Appeal Court’s concerns through a new equalities analysis adding that opportunities for disabled people were now being provided through social care services.

It all sounds a bit dodgy to us!

The government in Scotland has yet to announce how ILF users in their areas will be supported but has indicated that they intend to honour existing commitments to ILF users for as long as funds are provided.

 

Implications of the Independent Living Fund Decision

Created on 19 November 2013

The successful challenge to the government over the decision to close the Independent Living Fund has raised wider issues.   The EHRC had been an interested party in the court case.

The Commission intervened in the case, as an expert body with a mandate from parliament to oversee the public sector equality duty. The Commission was seeking to clarify what is required for a public body decision-maker to show that proper consideration has been given to the impact of a proposal which affects people with a protected characteristic under equality law.

The reason for the court’s decision is that the judges decided there was insufficient evidence that the ‘very grave impact’ on some of those affected was properly brought to the Minister’s attention, despite officials having been clearly informed of the possible impacts not only by service users but also by local authorities.

The court reiterated the importance of record keeping in being able to demonstrate that ‘due regard’ to the need to advance equality of opportunity has been had, and that general regard to issues of equality is not the same as a conscious approach to the statutory criteria.

Now this raises serious concerns about the practices of local authorities in using a “tick box” approach to dealing with equality issues.   Already the use of the Public Sector Equality Duty is governed by the Brown Principles.

In R. (Brown) v. Secretary of State for Work and Pensions [2008] EWHC 3158, the court considered what a relevant body has to do to fulfill its obligation to have due regard to the aims set out in the general equality duty. The six Brown principles it set out have been accepted by courts in later cases.

These principles are that:

  1.         Decision makers must be made aware of their duty to have ‘due regard’ to the identified goals.
  2.        Secondly, the due regard duty must be fulfilled before and at the time that a particular policy is being considered by the public authority in question.
  3.        The duty must be exercised in substance, with rigour and with an open mind.
  4.        The duty imposed on public authorities … is a non–delegable duty.
  5.        The duty is a continuing one.
  6.        It is good practice for those exercising public functions in public authorities to keep an adequate record showing that they had actually considered their … duties and pondered relevant questions.

The need to keep clear records that that they have carried out the first 5 has been reiterated in the ILF decision.  Principle 4 means that councillors must look at the PSED not officials.

The lack of records means that the decision is challengeable in law.  Recent decision in Glasgow where EIAs were produced but not discussed by councillors will not be open to legal challenge.

 

Victory For Independent Living Rights In English Appeal Court
Created on 12 November 2013

Statement by Anne Pridmore, Gabriel Pepper and Stuart Bracking:

“As three of the Independent Living Fund users who have challenged the legality of the government’s decision to close the Fund, we welcome the Appeal Court’s unanimous ruling that this decision should be quashed.

Given the Government has decided not to appeal to the Supreme Court, the new Disabled People’s Minister Mike Penning will now have to reconsider the Government’s approach to the future of the Independent Living Fund and its users.

Rather than being the ‘privileged group’ referred to in the High Court judgement, the Appeal Court has acknowledged the potentially very grave impact the closure of the Fund would have on its users, putting seriously in peril the ability of a large number of people to live independent lives in their own homes, and pursue activities such as employment and education.

They concluded that when Disabled People’s Minister Esther McVey made her decision in 2012 to finally close the Fund by April 2015, she did not properly consider the need to advance our equality of opportunity, minimise the disadvantage we face, encourage independent living, and promote our participation in public life and other social activities.

For a generation, the Independent Living Fund has provided funding to support disabled people with complex conditions who need personal assistance to live in the community.

Twenty years ago, Disabled People’s Minister Nicholas Scott who founded the Fund in 1988 explained its importance to the House of Commons (25/2/1993): “It has helped those severely disabled people who did not want to go into residential care but who could not live in the community without a considerable degree of domiciliary support to maintain their independence. That is something that we can all applaud and welcome.” This is as true today as it was then.

In the same speech, Nicholas Scott also acknowledged there were limits to the financial support local authority social services could provide some disabled people: “If it is necessary for extra help to be provided….it will be open to the social worker who assesses the needs of disabled people to say, ‘We can provide services up to this level but we believe that a further level of care is necessary,’ and then to turn to the Independent Living Fund.”

The Independent Living Fund has provided a platform for social opportunities to be pursued by severely disabled people in large numbers for the first time in history.

The careers, family life, friendships, social activities and roles people have built for themselves could be undermined and in many cases dismantled if the Fund closes.

Although the Appeal Court ruled the consultation which preceded Esther McVey’s closure decision was lawful, we believe there is now an opportunity to reflect on our society’s responsibilities towards those who rely on the welfare state to keep them safe, healthy and free of distress.

Last year, 2000 individuals and organisations responded to this consultation, but the Court of Appeal held the real substance of the consultation responses were not conveyed to Disabled People’s Minister Esther McVey. An opportunity for an open, democratic debate was lost.

By responding to the World Health Organisation’s recommendation in the World Report on Disability that countries should provide services in the community and not in residential institutions or segregated settings and plan how to achieve this, the human and civil rights of disabled people of all ages could be respected, not just those of Independent Living Fund users

Until a decision is taken to save the Independent Living Fund and open it to new applicants with adequate funding to meet people’s individually assessed needs, the fear many disabled people have expressed about their future will not disappear.

This fear stems from an understanding of the impact limited support in the community will have on people’s life chances, or for some of us the low standards and rigid approaches to personal care found in residential and nursing homes which place people at risk of skin conditions, sores and sepsis.

Many Independent Living Fund users are also acutely aware that, as long-term employers of personal assistants, if they are forced into residential care their knowledge of the law and care standards will bring them into collision with poor management and abusive cultures where they exist.

There is also a significant risk for people with learning difficulties and/or autism of physical and emotional abuse in segregated settings where restraint and drugs are used to control behaviour that is defined as ‘challenging’ rather than being approached with patience, compassion and kindness.

The fear of residential care that exists among Independent Living Fund users with ‘round-the-clock’ needs also exists among large layers of the general public.

When reconsidering the Government’s approach to the future of the Independent Living Fund, the new Disabled People’s Minister Mike Penning could give the Fund a long-term future under the democratic control of its users, but also commit the Government to respect existing rights to an individual assessment of need.

His Government could give disabled people of all ages the right to live in the community throughout their lives with the personal assistance and professional services they need, rather than the artificial and segregated environments found in residential care.

We urge Mike Penning to grasp this opportunity and remove the uncertainty many thousands of severely disabled people and their families have experienced for several years.

We would like to express our sincerest thanks to: our fellow claimants Paris L’amour and John Aspinall and his parents Evonne and Paul Taylforth; the tireless work of solicitors Louise Whitfield of Deighton Pierce Glynn, Kate Whittaker and Diane Astin of Scott-Moncrieff and Associates, and our barrister Mr David Wolfe QC; the supportive intervention of the Equality and Human Rights Commission; and Independent Living Fund user Kevin Caulfield’s networking and guidance during the case.

We also acknowledge those Independent Living Fund users who have highlighted the impact closure would have on their lives, particularly Penny Pepper, Sophie Partridge and Mary Laver, which is not easy given the privacy most Independent Living Fund users and their families strive for.

We would also like to thank: Disabled People Against Cuts and Inclusion London for the campaign coordinated by Linda Burnip, Debbie Jolly, Tracey Lazard and Ellen Clifford; other users of the Fund and disabled activists who have attended protests and vigils and supported the campaign; the two thousand organisations and largely anonymous individuals who responded to the Independent Living Fund consultation a year ago; the support of the PCS union and the workers at the Independent Living Fund; our personal assistants; the work of campaigning journalist Kate Belgrave; and the consistent reporting of this issue by John Pring at the Disability News Service.

The future is ours to shape, but only if the personal assistance we need is present.”

 

Created on 07 November 2013

On Tuesday 7th November the Appeal Court in London upheld a legal challenge to the government’s decision to close down the Independent Living Fund.  The judge held that the government had failed to take account of their duties under the Public Sector Equality Duty to promote equality of opportunity.

This is a good step forward but does not yet mean the Independent Living Fund is saved.  The government may yet carry out a quick consultation or another manoeuvre that allows them to meet their legal duties and then go ahead and close the fund anyway.  There is still 18 months before the fund is due to close in April 2015.

Meanwhile we would expect the Scottish Government to continue analysing the results of their consultation on the future of the ILF in Scotland.  The ILF may be saved in the end but nothing is certain yet.

 

Replacing the ILF in Scotland

Created on 24 October 2013

The Learning Disability Alliance Scotland is calling on the Scottish Government to set up a new Scottish Enablement Fund to be run by an independent trust as part of their future plans for the transferred resources from the Independent Living Fund.

The Scottish Government is planning to maintain payments to all existing users of the ILF for as long as it continues to get funding from Westminster.   But it wants to know what to do with any existing monies that become available and how they could be best used to support disabled people.

In its consultation response LDAS has suggested that this money could be used to help disabled people achieve valued outcomes such as maintaining friendships and getting jobs  on a sustainable basis where local authorities do no prioritise such aims.

The new fund would be a “light touch” trust that would step in after individuals had been assessed by social workers and received their individual budgets through Self Directed Support.  This would let the fund’s resources be used to meet outcomes that local authorities had decided not to meet.

An independent trust to manage this money would be able to replicate the low administrative costs that have been a feature of the Independent Living Fund.  It would also be able to make resources available on both a short term, long term and one off basis.

Ian Hood, Coordinator of the Learning Disability Alliance Scotland said, “We have heard from many people about how they value the ILF and  are worried that local authorities might take control on fund.  Many fear losing the flexibility of the fund.  We think this proposal provides a real opportunity for the Scottish Government to create new opportunities for disabled people.”

The consultation closes on Friday November 1st 2013.  Read our full consultation response here.

 

A Future for the Independent Living Fund in Scotland

Created on 18 September 2013

While in England, the Independent Living Fund is heading for closure, new possibilities are opening up in Scotland.  The Scottish Government has recently launched its new consultation into what will replace the Independent Living Fund in Scotland.

Their intention is that current recipients should not have their existing funding taken away unless their personal circumstances change and they become ineligible.  This should be a relief to many people who are worried that they might face their funds vanishing into the black hole of local councils’ social work departments.

A key aim is that the Scottish Government will therefore seek to implement a scheme which will enable current recipients to  continue to receive the same award as they would have had, had the Fund not been  abolished, for so long as they continue to meet the eligibility criteria which gave them access to the Fund.

There is a little caution over this as funding has only been agreed for the first year of the transfer 2015-16.  Negotiations are underway on how much will be transferred in future years.  But LDAS is led to believe that Scottish Government officials do not believe there will be a major problem in coming to an agreement.

As a result the main focus of the consultation is what to do with the relatively small amount of money that will be freed up each year as people’s needs change or people stop their claims. The devolved ILF money will come to just over £50 million and current estimates suggest that about 10% of ILF funds become available each year.  So we are talking about £5 million to start with.

Our favoured option is that the money could be put into a new fund that supported “valued outcomes” that people might not be able to access through local authority assessments either because they fell out with the eligibility criteria or local authorities refused to meet valued outcomes such as maintaining or making friendships.   

Another option is  that the money be used to support other people who could have applied for the ILF  – a bit like a limited pot Scottish Independent Living Fund.  This would mean substantial support for a relatively small number of people.

There are pros and cons to all the options but you can have your say in the consultation which closes at the start of November 2013.

 

Created on 14 August 2013

Today the Scottish Government launched its new consultation into what will replace the Independent Living Fund in Scotland.  While there is a lot to work out, the Scottish Government’s intention is that current recipients should not have their existing funding taken away unless their personal circumstances change and they become ineligible.  This should be a relief to many people who are worried that they might face their funds vanishing into the black hole of local councils’ social work departments.

A key promise is that the Scottish Government will therefore seek to implement a scheme which will enable current recipients to  continue to receive the same award as they would have had, had the Fund not been  abolished, for so long as they continue to meet the eligibility criteria which gave them access to the Fund. Their ability to support such a scheme is subject to sufficient levels of funding being devolved from the UK Government to the Scottish Government for this purpose.

As a result the main focus of the consultation is what to do with the relatively small amount of money that will be freed up each year as people’s needs change or people stop their claims. The devolved ILF money will come to about £50 million and current estimates suggest that about 10% of ILF funds become available each year.  So we are talking about £5 million to start with.

The question is should the money be used to support other people who could have applied for the ILF  – a bit like a limited pot Scottish Independent Living Fund.  This would mean substantial support for a relatively small number of people.

Or the money could be put into a new fund that supported “valued outcomes” that people might not be able to access through local authority assessments either because they fell out with the eligibility criteria or local authorities refused to meet valued outcomes such as maintaining or making friendships.

Or then again the fund could be used to support short term initiatives such as travel training or skill learning that would support some people to be more independent with funding reducing as people become independent.

Finally there is the question about who might manage such a new fund – the local councils, the Scottish Government, another existing public body or a new national trust or partnership.  There are pros and cons for all these.

LDAS will be publishing its own thoughts on these shortly.  You can read the full consultation documents here.