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|08 Dec 2016|
Ayrshire Stronger Together
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
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.
Integrated Joint Boards were all fully established by the end of March 2016. A number had been meeting over the previous years while some ran their Shadow Boards right up to the deadline.
It is early days in the operation of Integrated Joint Boards. So much so that there is not even harmony in what to call them. Some just invert the letters and call them Joint Integrated Boards, one or two still call them Health and Social Care Partnership Boards.
However these have been 3 years in the making and none of them can claim to be surprised that they are suddenly running the health and social care together. Early directions really matter. They set the path for future development. Those who say it is too early to judge are making a mistake. Once structures and priorities are established it is hard to shift huge bureaucracies that are rely on hundreds and thousands of people to make decisions and carry out their policies.
That is why we wanted to understand what was happening with Learning Disability services in the new Integrated Joint Boards and how would the needs of this group of vulnerable adults have their needs addressed.
We decided to examine the agendas and reports for 2 meetings for each of the Integrated Joint Boards currently operating in Scotland. We wanted to cover wherever possible meetings since April 1st 2016 since that was the date that Boards were given full legal responsibility.
We ignored agenda items which cover the minutes of sub committees and looked at the general headings of each agenda item. Where it was unclear what an agenda item was about we looked at the reports in more detail. You can see the dates of the meetings and the agenda items covered by linking here.
The agendas ranged in size from looking at 3 to over 20 agenda items. Even the minutes of the meetings gives no idea of how long the meetings take and the amount of time devoted to each item. It is possible that those looking at 3 items touched on them in more detail than those with large agendas. But the disparity is in itself interesting given that the “democratic control” exercised by councils over all social care matters has now been transferred to half appointed, half elected Boards. Who is it that now has authority for supervising decision making on matters of local autonomy, if items are not discussed at the Integrated Joint Boards.
In the 62 Board Meetings that we looking at, no Board directly addressed this matter. Of course, IJBs are busy organisations and don’t cover every part of their remit at each meeting. Prioritisation is an important part of efficiency.
Digging a little bit deeper in the papers managed to find one reference to a Learning Disability service review as part of an overall plan in Glasgow to transform Health and Social Care generally. This plan was to use the Integrated Joint Board’s resources to lever other public resources into joint working on a much bigger scale.
4 Boards directly addressed the matter of mental health (Angus, Dumfries, Glasgow and Moray). 3 of these boards looked at the coordination between in patient and community services. The other discussed a strategy board that set up coordination meetings. It would seem that the linking of resources from the health and the social care sections was the driver for this attention.
1 board (West Lothian) looked at issues connected to people with physical disabilities. This was to establish a 3 year commissioning cycle of support services for people with physical disabilities.
However Delayed Discharge and plans for changing care home for older people were discussed on 55 agenda items. These ranged from progress updates on the numbers of people who were experiencing delayed discharge of greater that 14 days to the plans for developing more “intermediate care”.
Intermediate Care is defined by the Joint Improvement Team as “intermediate care as a continuum of integrated community services for assessment, treatment, rehabilitation and support for older people and adults with long term conditions at times of transition in their health and support needs”. However many of the reports seemed to describe this as a “building based” service which would help people leave hospital and move (temporarily) to a setting that would then enable them to get ready to move home again.
Our concern is that the focus of Integrated Joint Board will be on those very areas in which there is a strong shared interest in approach from the health and social care sector. Some of the very success in Learning Disability support has been about establishing the predominance of social care and the social model of disability.
Even though there are strong residual Learning Disabilities within the health service, the social model dominates. Integrated Joint Boards might choose to spend much more time and resources on “priority” issues such as delayed discharges and the pathways for older people to return to the community.
….. More to Follow…..
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