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As we approach Referendum Day, we are publishing the results of a continuous opinion poll we have been conducting over the last year.
At LDAS we were determined that people with learning disabilities should have every chance to be involved in the political debate in Scotland in the run up to the referendum. We weren’t going to be satisfied calling for more information to be published and leave it to people to work through themselves. The referendum have seen a range of communities traditionally hard to engage with actually coming forward and taking part in the debate with their own questions and views. Why should people with learning disabilities be any different.
We ran 52 workshops with more than 700 people looking at issues surrounding independence and how to vote. We travelled from Ellon in the north to Newton Stewart in the south of Scotland speaking to groups. We started from the basis that there should be no “understanding” test. We also wanted to make sure people with learning disabilities could explore a range of ways of deciding and more complicated issues.
The workshops were shaped by groups of people with learning disabilities in Stirling and Glasgow and then continually refined by the comments and questions from people taking part. While neither the yes or no camps published 'easy read' information until late into the campaign, some of our activist groups prepared their own using the top ten questions raised by people in the groups. Others went off to the Scottish parliament to interview Labour's Jackie Baillie who runs the cross-party group on learning disabilities and the SNP's Joan McAlpine whose sister has Down’s syndrome. They made a short video http://tinyurl.com/LDASinterview outlining what difference the referendum would make for people with learning disabilities.
Those taking part found the workshops fun with lots of questions to think about. Who likes Flower of Scotland and who likes God Save The Queen. Who thinks that losing the pound is a good reason for voting no? Will the oil make us rich? Everyone got a voting handset, just like in “Who Wants To Be A Millionaire” and the answers came up on the screen. We knew we were on to a winner when someone told us – “you’re better than that lot on the telly".
But this wasn’t information being delivered from above. The workshops were continually changed depending on feedback from the people taking part. The participants told us what they wanted to know more about and then we went to both Yes Scotland and Better Together to get the answers. A video was produced http://tinyurl.com/Ldvoices with 20 people with learning disabilities giving their opinion on the referendum and used to help people decide.
But this is not just about the referendum, it is the latest stage in a process of growing engagement of people with learning disabilities with mainstream issues. At more and more of the later workshops people have been coming along wearing campaign T Shirts and badges and telling us they have been out campaigning, helping in leafleting and some are even going to the official vote count.
And the results: 37 workshops went for Yes, 10 for No and 5 were a dead heat and with the total count being
Yes - 400 (55.5%)
No - 207 (28.7%)
Don’t Know - 114 (15.8%)
We hope that whatever the result that people will still carry on being engaged and connected. There is a lot to sort out
It is with some sadness that we have to announce the closure of the Engine Shed in Edinburgh. Below is a statement from Marian MacDonald, CEO going into more detail on this matter. Last year thousands of people signed petitions and protested against the threats to the closure and we were able to win a year’s reprieve for the service. However the policy of the council did not change and it continued to pursue a single approach to helping people with learning disabilities into work.
This made it impossible to secure continuing funding from this council department for a service like the Engine Shed which focuses on providing a more complicated pattern of training opportunities, work placements and job hunting. In addition the Engine Shed’s ability to manage was getting more difficult following several years of the restricted funding from the council. The Engine Shed was getting less money last year than they did 10 years previously.
As far as we are aware at no point in the last year has anyone from the council said that they didn’t want the Engine Shed but it has suffered from not fitting into the new priorities that the council has been promoting. Given that we are moving into the world of choice, Self Directed Support, where people who get services can choose what they want to do with their support, it is strange to see this unique and valued service vanishing by neglect while it remains popular with those who use it.
The questions we will have to face in the future are
· how much choice do people with learning disabilities really have if there is only one model of support for them and
- how many other services that people rely on are also suffering from this gradual restriction on council funding?
ENGINE SHED STATEMENT
You will be aware that over the past two years the Engine shed had been responding to the challenge brought about by the review undertaken by the City of Edinburgh Council (CEC) of their funding strategy for specialist employability service in Edinburgh.
A local authority and a community special school are facing legal action on behalf of two autistic pupils over the use of a ‘calm room’ to manage their behaviours.
Law firm Leigh Day, which is acting for the claimants, said the pupils were allegedly ‘detained’ in the room at Abbey Hill School in Stoke on Trent for “for prolonged periods, where they defecated and urinated and showed other signs of considerable stress and anxiety”.
The claimants are now at alternative specialist autism centres.
In a letter to the school, Leigh Day claimed the two pupils had been “subjected to inhumane and degrading treatment and that the use of the ‘calm room’ for extended periods, without appropriate safeguards in place, was an unlawful act as it deprived pupils of their liberty”.
Merry Varney, a lawyer in the human rights team at Leigh Day said: “Although the use of seclusion and ‘calm rooms’ are recognised, positive tools to use to assist autistic children, these must be used appropriately with effective safeguards in place to prevent inappropriate use.
“Our clients appear to have been placed regularly in a very small room, with little natural light, sparse furniture, and no ability to leave, for an hour or more at a time. Rather than having any calming effect, the periods of seclusion led to significantly increased distress and deterioration in our clients’ behaviour.”
Varney added that the parents had not been informed at the time of the extent of the use of ‘calm room’.
Stoke have been approached for comment. A spokesman for Stoke said: “The allegations concern the use of the quiet room at the school and only relate to two pupils who left the school in 2012. The quiet room has not been used for more than 12 months. This matter is now the subject of legal discussions and it is not appropriate to comment further.”
August 2014 saw the 2013 ESAY figures published. ESAY is a Scottish database complied by the respected Scottish Consortium on Learning Disability on what support and services people with learning disabilities get.
We have been concerned for a while about the decline in number of people with learning disabilities known to Glasgow City Council. We have been given different reasons for a regular annual decline – counting systems, double counting, introduction of personalisation. It turns out that the reason for this is that their new computer system only counts the number of people who actually get support (see Note 1 on page 3). This computer system (Carefirst 6) was introduced in the last couple of years to help manage the personalisation process.
As a result it is likely that Glasgow's computer system is very good tracking the number of people getting Self Directed Support over the last few years. So the Glasgow figures can tell us how many people with learning disabilities get support as personalisation has spread through their services.
In 2009-10 2,724 got a service (2010 ESAY figures page 55)
By 2012-13 it had fallen to just 2,410 getting a service (2013 page 5) – a fall of 314.
This will be made up of people who have been denied a service because they are deemed ineligible for support, those who have died and a reduced number of young people getting a service for the first time.
We can see the evidence for some of this if we look at the ESAY figures for Glasgow.
In 2009-10 204 people with learning disabilities in the 16-20 age group got a service (page 55).
In 2012-13 this had fallen to only 143 . (pages 6 & 7) - a fall of 30%.
There has been a lot of attention to what is called “transition”. Yet this seems to suggest that many young people are not getting support as they move over to adult services. We are not able to be sure exactly what is happening but we do think there need to some explanation of what is going on in Scotland's largest city.
Scotland Against the Care Tax (SACT) has launched a national petition calling on the Scottish Government to abolish charging for social care, the ‘Care Tax,’ as frustration with the failure of COSLA to regulate care charges has led to voluntary sector representatives walking out of the partnership.
The petition calls on the Scottish Government to use powers it already has to abolish care charges throughout Scotland. It has been signed by 29 organisations representing disabled people, people with long-term conditions, older people and carers. Sign the petition here . Download a paper copy to sign and return here
Three years ago COSLA told the Scottish Government it would set up a working group to harmonise charges across Scotland in response to concerns over poor practice. A number disabled people’s representatives have worked with COSLA since 2011 to try and deliver this. Of the 5 third sector organisations represented on the COSLA Working Group 3 have resigned from it this week.
Figures show that over the last three years, care charges have risen on average by 12% with increases in some councils far more than that. Aberdeen City has more than doubled its charging income from disabled people in the last 2 years, while West Dunbartonshire Council has more than trebled their income from the Care Tax.
Nearly every local authority in Scotland charges disabled people for the care they receive. Councils are currently allowed to choose if and what to charge. Support for getting up and going to bed, eating and drinking, and seeing family and friends are all things that can be charged for.
There is no upper limit on what councils can charge for care. This means some disabled people are charged 100% of their own, already severely limited, income for the care they are entitled to.