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27 Jun 2017
Dundee Stronger Together

In total, there are about 280 people with learning disabilities in NHS Learning Disability units at some point during the year.  Many are placed there due to Compulsory Treatment Orders (CTOs).  They can  end up  staying for up to 9 years, long after they should have moved back to the community. 

Earlier this year the Mental Welfare Commission found that at least one third were ready to live in the community but there is no place for them to goThe worst was in NHS Lothian, 46% are in hospital when they no longer need to be.

Where compulsion is used people with learning disabilities have it tough, spending an average of 4 years detained in hospital.    For people without learning disabilities it was less than 2 years.  

And it is  happening to more. Between 2006 and 2012, there was a 39% increase in the number of people with learning disabilities subject to compulsory measures       In comparison, in the same period, there was just a 7% increase in the use of compulsion for people without learning disabilities.

Mental Health Tribunals are meant to provide scrutiny so people  are not treated  unfairly.  But of  1,378 application for CTOs in the first 8 months of this year, only 1.8% (24) were rejected.    Once you are in it is easier to keep you in.  Of 289 applications to extend a CTO only 2 were rejected.  

Sometimes the threat of a CTO is enough.   For nine years Daniel Young from Dundee lived in his own house with 24 hour support from a care team.  He was happy and enjoying life. However in 2014 things started to go wrong.    Daniel reported feeling insecure and unsafe in his home, resulting in verbal aggression towards staff and physical harm towards himself.   Staff responses, in effect, punishing Daniel,  helped to escalate his concerns and behaviour, until there was a “breakdown” in care provision in January 2015. 

Rather than deal with his care, I as his Welfare Guardian, was only given the choice of medicating Daniel at home or admitting him to a NHS assessment unit.  If I didn’t choose one, then a CTO would be used. 

In order that  Daniel had a place of safety, I chose the  NHS Unit while we tried to find a more suitable care provider.   Things haven’t gone well for Daniel in the last year. He has become depressed and withdrawn; a stark contrast to the articulate and humorous young man two years ago.    And 18 months on,  no suitable residential placements have been identified for him.  His mental health continues to deteriorate so significantly that he may not be fit for discharge by the time a home is found for him.

There is a lack of adequate care and support for some of the most vulnerable people in our society.  The growing use of CTOs indicate that mental health services are being used to respond to what is in many cases an issue of inadequate provision of support.

Mental health services not should serve as a buffer for lack of social housing and adequate community services.   Two things that might help change this are:

The Scottish Government’s review of the Mental Health Act in relation to people with learning disabilities and autism might help by providing new rights to services and support.  But the review proper won’t start until April 2017 and any resulting legislation is likely not to be implemented until well into the 2020s. 

Over the summer the launch of the “Shared Ambition for Social Care”  aimed at rethinking the whole approach to the funding of social care in Scotland.  We do need a different approach that can tackle all the problems that we face from low wages to inadequate services otherwise people like my brother, Daniel will remain trapped and lost in the wrong place. 

By Ian Hood & Hannah Young

 

 

 

 

Hiba Al Sharfa has become the Gaza Strip’s first teacher with Down’s Syndrome, after a lifelong effort to achieve the dream.

Al Sharfa teaches at Right to Live, an NGO based in the Gaza Strip that supports and cares for children with Down’s Syndrome. It works to help educate and support children with the learning disabilities with the aim of helping them integrate into mainstream society.  

Other members of staff say Al Sharfa is close to her students and able to better meet their needs because she understands their experiences having lived through similar struggles herself. More than 400 children are educated at the Right to Live Centre, who participate in classes including dance, crafts, and life skills.

Nabil Aljaneed, director of rehabilitation at the Centre, said there is still a great deal of work to do in supporting people with Down’s Syndrome in Gaza. “We do numerous workshops and awareness programs for the local community, because honestly until now the local society is very poor when it comes to accepting the kids and young people who have this disorder,” he said.

The Learning Disability Alliance Scotland launched its latest project on Tuesday 13th September.   Mairi Benson and Alexander Warren started work developing new ways to help people with learning disabilities connect with the projects that support them.   

People with learning disabilities want to be more involved in having a say over what happens in their lives, how the organisations that support them work and the policies that affect them.   Many people with learning disabilities now enjoy more independent support settings and have less overall support due to cutbacks.  They use their support on aspects of their life such as skill acquisition or leisure and leaves little for taking part in formal consultations.

  In a world of individual services and dispersed choices, attending service user meetings means using precious support time that could be used in other ways rather than travelling and spending hours in a meeting.  Many younger people with support needs also tell us that they don't like the "old fashioned" type meetings.

Our idea is to test a model of going out to where people already spend their time with easy to use tablet computers loaded with simple and clear surveys that people with learning disabilities with different capacities to understand, can take part in.

 We think that the use of communication technology along with better use of publicly available apps can help more people become involved in making choices in a setting of their own choosing with a smaller time commitment on their behalf.  We will also test a further range of communication strategies including quizzes, games and activities.  

We think people are more likely to contribute 15 minutes of their time if those doing the survey go to them and supports them to answer.  This will help organisations make better decisions and ones that fit the needs of people themselves.  People will benefit from more confidence with IT, gain more confidence in their decision making and  become involved in other ways of speaking up.  And this will help people with learning disabilities enjoy better services and make sure that those who make decisions about that affect their lives do so with the widest possible information

If you are interested in knowing more about this project This email address is being protected from spambots. You need JavaScript enabled to view it.

The Scottish Government is going review the place of learning disability and autism within the Mental Health  Act. 

They want the review must be open for everyone to take part in and they are open to any ideas that people have.   

The review can look at lots of different things. The only definite thing is that it will look at views about removing learning disability and autism from the definition of ‘mental disorder’ under the Act.

This is important because:

• The Mental Health Act  lets people who may require treatment, but who do not accept the need for it, may be detained in hospital, under the care of a psychiatrist, to receive such treatment. 

• However, learning disability and Autism are lifelong conditions, which cannot be cured or treated by medication. This could mean people being detained for lengthy periods because the right services are not available. 

• People with learning disabilities or autism who have  challenging behaviour may receive poor services. It would be the correct response to provide good services, rather than place the individual in hospital. 

The continued inclusion of learning disability and autism in mental health legislation contributes to the marginalisation of people with these conditions.

Between 2006 and 2012, there was a 39% increase in the number of people with learning disabilities subject to compulsory measures       In comparison, in the same period, there was just a 7% increase in the use of compulsory measures for people without learning disabilities.

The average time people with learning disabilities were detained in hospital was 4 years.  For people without learning disabilities it was less than 2 years.  

  A consultant has been going around speaking to people to find out what they think should be included in the review.  This is called a Scoping Exercise.  LDAS said there were 14 things that they should look at.  

1. That whatever is the outcome of the Review there should be no undue interference in people lives.  People with learning disabilities are entitled to the same rights and responsibilities are everyone else and that includes the right to make both “good” and “bad” decisions.

2. The review should explore the existing “right to advocacy”, its limitations and how resources could be made available to meet the current duties and how this could be expanded in the future. 

The study by researchers at Glasgow University reported in Wednesday’s Herald that found children conceived during winter months were more likely to have a learning disability makes interesting reading.  Professor Jill Pell, director of the Institute of Health and Wellbeing at Glasgow University led the research which looked at information collected by the School Census covering 800,000 Scottish children.  

It is too early yet to fully understand what might cause this.  Concerns about the lack of Vitamin D caused by inadequate sunlight have featured regularly in the Scottish health conversation over recent years and it may be that this is indeed the case.  And Professor Pell, thinks that this is the cause.   She says, “"Vitamin D is very important for brain development in the child and the first three months (after conception) are the critical period when the brain develops.”  A lack of Vitamin D in the first 3 months of conception is “the most plausible explanation for the trend”

However the researchers admit they carried out no work on Vitamin D levels in pregnant mothers or any school children.  They are not even able to cite any “human related” research into the effects of reduced Vitamin D levels in pregnancy. 

As a result without any serious evidence, we are given a new scare about more people being born with learning disabilities.    At the Learning Disability Alliance Scotland, we believe that people with learning disabilities live valued and valuable lives.  There is nothing to be scared about!

We need to be careful in drawing such conclusions  from this type of research.  The research is primarily secondary analysis of existing data.   The quality of the research will depend on the quality of statistics that are being used.   The school census used does not rely on health diagnoses but uses instead diagnoses by a variety of education professionals who are using this information for their own purposes – addressing specific educational challenges.   This is a legitimate aim.  It can help teachers and teaching assistants do better work if they know more about the educational needs of their pupils.  It may also lead to more resources being made available to help in the classroom.   

This can in some cases produce a bias in arriving at a “diagnosis” or, more accurately, a “characterisation”.  Many children on the border line will be given a “diagnosis” as this is the route they can get help. 

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