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02 Jun 2017
Forth Valley Stronger Together

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

Dear Councillor Cunning

 

Thanks for your reply to my email.  It was indeed useful in understanding your approach.    It was also sent on to me from other councillors. 

In it you makes two points – first that there is no new policy and secondly what is being proposed is not institutionalisation. 

In the end, it is up to elected councillors such as yourself to judge whether a new policy has been adopted. 

We would suggest that there has been a clear policy across Scotland to move away from care homes and to support people to live in their own homes.  This has been the case in Glasgow more than anywhere else as you can see from the table below.

Care Homes for All Adult Groups bar Older People

Area

March 2003

March 2013

Scotland

37,947

34,933

Percentage fall over 10 years

 

-8%

Glasgow City

4,691

4,041

Percentage fall over 10 years

 

-14%

Number of people with learning disabilities in care homes in Glasgow

317

208

Percentage fall in 10 years

 

-35%

  Source for statistics - Scottish Care Home Census, 2013                               

Throughout Scotland there has been a shift but in Glasgow there has been a real move away from care homes.  In fact, over the period the number of care homes in Glasgow has fallen by 20%.  Care homes have been closing, rather than opening.

Not only have care homes been closing, they have been getting smaller.  In 2013 there were 233 care homes in Scotland for 1,588 long term residents with learning disabilities making the average size of care home 7 places each - one third of the proposed new service. 

It is slightly harder to get  current figures for separate local authority areas but information we collected a few years ago says that in 2011 the average size of care homes for adults with learning disabilities in Glasgow was only slightly higher 8 places and it may have come down since then. 

Such actions by Glasgow reflect a good policy of developing and supporting independent living where resources allowed and smaller care homes where it was harder to make progress

It was the type of policy that  Matt Kerr, former Executive Member for Social Care might have been endorsing when he said,  “However, with the self-directed support bill currently going through parliament, the landscape for social care in Scotland is shifting and we must move with the times.  .... By reforming now, we a have a huge opportunity to support more people to integrate more meaningfully into their local communities, which is a key principle of national policy."

Independent living and smaller care homes really do help integrate people more into their local communities. 

Councillors need to decide if the decision to tender for a 20 bedded care home, three times the size of the Scottish average is a change in the policy or not.   But I find it surprising that a decision which impacts on Glasgow’s sons and daughters does not need to be approved by a council committee, yet a paper contract between two corporate bodies does.  Does the value of contracts trump the value of individual men and women?

  The second charge is that we are over egging the proverbial pudding on the charge of institutionalisation.    The point of the Bubb Report is about institutionalisation generally.   It didn’t deal with the causes of the Winterbourne scandal but instead looked at why more people with learning disabilities were still ending up in large institutional settings rather than less. 

The Bubb report was clear it was not just “the setting” that was the problem but “the concept”.  Bubb quotes ‘“the  1851 American physician and philanthropist Samuel Gridley Howe wrote about the “evils” of institutional care. He wrote, “all such institutions are unnatural, undesirable and very liable to abuse. We should have as few of them as possible, and those few should be kept as small as possible. The human family is the unit of society.”’ (p7)

It is not true as you claim that “it is simply no longer appropriate for some individuals to be sustained in individual placements.”   Since Urquhart’s “Study of the Balance of Care” in the 80’s, it has been clearly demonstrated that every person living in an institution has their equivalent person living happily in a community setting.  You may choose not to use resources to support people in the community but it is a choice. 

We would prefer that no adult with a learning disability had to live in a group setting unless they chose to do so.  However we do recognise that this is the reality in Scotland (and the rest of the UK).  We and many others are working with Scot Excel to ensure that those homes that do exist are properly supported, supervised and regulated.

But there is a point when quantity transforms into a qualitative change.  The Mental Welfare Commission report referred to in my first email “A Home Of My Own” investigated homes of 20 or more residents with learning disabilities.  

These larger homes are of particular concern.   Particular issues of institutionalisation are likely to occur and even with active management it can be impossible to prevent.    Two of the large Lanarkshire care homes (40 & 26) that Glasgow City Council uses to place adults with learning disabilities are no longer able to accept new placements because of poor grades being judged as “weak” in performance by the Care Inspectorate.   The one large care home in Glasgow that is currently used by the Council for people with learning disabilities has only earlier this year left behind its 5 year record of “adequate” or “weak” performance. 

While many of the staff and people who worked in long stay hospitals were undoubtedly committed and caring like yourself, many others were not and the bigger the unit, the more the opportunity for abuse and neglect. 

At Ladysbridge Hospital which you refer to, serious concerns of ill treatment of patients with learning disabilities were raised by the Scottish Health Advisory Service in 2001.  They said that people with learning disabilities and some staff were afraid to report abuse at the hospital.  Twelve incidents were investigated during the 1999-2001 period and there may have been many more that didn’t come to light.  As a result of this NHS Grampian accelerated the closure programme at the hospital. 

But this isn’t just about abuse or neglect although these are more likely to happen in large services.   Institutionalisation is where the needs of the service are put ahead of the individual -  regimes are set for the smooth running of services rather than the needs of individuals.  The bigger the home, the more likely this is meant to happen. 

James is 66 and spent 30 years in Lennox Castle.  For the last 15 years he has lived in his own home and made his own choices.  But he still has nightmares about his treatment in the Castle.  Partly about the abuse he suffered but also just about the control that was exerted over his life – when he was allowed out, meals at set times, shared clothes, cups of tea premixed with milk and sugar.   Now at his next assessment, his carers will be asked to justify why he shouldn’t move into a care home, perhaps this new one.  Most people would accept that James has served his time already. 

The decision on the future of care for people like James lies in the hands of yourself and the other councillors of Glasgow City. 

Yours Sincerely

Ian Hood

 

Coordinator

Glasgow City Council Social Work Services are currently tendering for a new 20 bed Care Home for people with learning disabilities.

In Scotland we like to think of ourselves as being more forward thinking than the rest of the UK.  But in November, shocked that more people were entering institutional care than leaving it in England, Norman Lamb MP, the UK Minster for Care admitted on the radio that the problem is that local authority provision for people living in independently was falling behind. And he promised action to deal with it.  The money was there, he insisted.  

ITS NOT THE SAME IN SCOTLAND

Glasgow City Council is seeking "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 comprise 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.”

The service has to be fully up and running  by 7th January 2015.

REAL CONCERNS

We are concerned because 

The Educational Institute of Scotland (EIS), the country’s largest union for teachers and lecturers, has highlighted the significant impact of long term cuts to Further Education funding on Additional Support Needs (ASN) provision in Scotland’s colleges. The EIS submitted Freedom of Information (FoI) requests to each college in Scotland asking key questions regarding each institution’s ASN provision. The results show a significant decline, nationally, in the level of support available to students with ASN in Scotland’s FE colleges – with significant regional differences in provision.
 

 EIS-FELA (Further Education Lecturers’ Association) President John Kelly said, “The results of this national survey of ASN provision in Scotland’s colleges clearly indicate a significant decline in ASN provision for students since the Government began implemented funding cuts for FE colleges four years ago. The evidence from this EIS-FELA survey shows that it is the students who both require and deserve specialist additional support that are suffering the deepest and most damaging consequences of funding cuts. Continued funding cuts have led to a systematic reduction in ASN activity and a reduction in total college capacity to support ASN students – the most vulnerable students in society. The sad truth is that cuts to ASN provision make it far more difficult, if not impossible, for many of these learners to access education at all.”

 

 He added, “The Survey also identifies an alarming range in the amount of ASN provision different FE regions provide, which raises serious equality concerns. For example, Dundee College had 699 DPG18 (ASN) students in 2012-13 whilst Aberdeen College had 240, despite being a much larger college. In the same year; West Lothian College, Aberdeen College and Anniesland College all delivered similar amounts of DPG18 ASN activity despite significant differences in their size and geographic footprint. ASN provision is erratic and it would seem purely historical, with no nationwide planning, that the levels of support ASN students receive is dependant mainly on where they live. For Learners with ASN, potentially having to travel to an institution in another part of the country can present a significant barrier to their access to education.”

People from Black and Minority Ethnic (BME) communities are less likely to get a service than people from a White Scottish background. 

While the census shows that that BME people make up 5.2% of the Scottish population, the national database on learning disability, ESAY show only 1.24% of people with learning disabilities are from a BME background. 

There are some wide regional variations.Table about proportion of people with a learning disability from a BME background

 Many BME communities are well established in Scotland and are likely to have a similar incidence of learning disability in the population.  As a result  there has been a lack of clarity about what is going on.  Fortunately  a recent report from the Action Group on their work with people with learning disabilities has helped to provide some explanations. 

BEMAS Transitions has worked with 50 young adults and their families since 2011. This is one of the largest projects of its kind in Scotland.  The project was to help young people to set goals and to try and make them happen.  In so doing, they would learn more about the barriers that people from BME communities face.

What they found makes worrying reading.  Among the key barriers the project found were:

Lack of Access to Information and Support - Almost all disabled people and their families have a problem knowing what services and supports are available.  This is made worse for people from BME communities.  Some have English as a second language.  Others have come from another country with very different social infrastructure systems and different terminology.  Previous experiences of discrimination when using other services has made others  fearful of dealing with a new organisation.