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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.
Last week LDAS published an article concerning a K, a young man with learning disabilities and cerebral palsy who had been in dispute with Glasgow City Council.
The original article contained a factual inaccuracy that we accept was wrong and apologise for any upset caused to Glasgow City Council. The case was not heard in court but settled before this took place.
K's budget has been restored to its original level. The case was supported because K's Mum kept every document and every email. She requested that everything be put in writing. This was to prove invaluable in the battle. (we recommend that you ask for everything in writing - it does matter!)
The lesson is simple. Persistence can pay off. Keep as many records as you can. Ask for things in emails or in writing. Ask that meetings are minuted and that you are given a copy. If you disagree with what is in a minute, then let the person who wrote them know and keep a copy of your disagreement with the original minutes.
Last year’s buzz was Self Directed Support—It was going to change everyone’s life by letting them have more control over their own lives. Now as the results turn out to be much more mundane. Most people end up with exactly the same service or just less of it, the buzz is now Health and Social Care integration. Surely if we all work together then that will make things better.
It all sounds a bit desperate to us and already stories are emerging of exactly how poor health and social work are at working together.
Kathleen Ward from Fife, who has learning difficulties broke her back tripping on a damaged kerb. There was a big bit missing out the kerb which she didn’t see and she fell right down on to the road. Her back is broken in three places.
While she is ready to go home, she is stuck in Glasgow’s Southern General Hospital as Fife Council has told her family that they won’t fund care for her at home. She previously lived in her own home with support but will now need much more support.
She may have to face going into a care home. We have heard similar stories from South Lanarkshire and other areas. Of course, many people are now worried integration will just be a short cut for taking people from community placements and steering them into inappropriate care home placements.
To add insult to injury, guess who was responsible for not fixing the broken kerb that caused Kathleen’s accident – Fife Council!
A week ago the Audit Commission published its report on "Self Directed Support". It found that there was a mixed picture across Scotland about how well councils were preparing. As usual in reports of this kind, there were plenty of positive stories about how Self Directed Support is helping people make a change in their lives.
But there are plenty of other stories which paint a much bleaker picture. Yesterday LDAS spoke to the mother of John, who has severe autism and learning disabilities. He actually has a good service right now that helps him live a much better life. But it does cost a lot. The local council is now working on a reassessment programme for those who already get services. John has been given his first indicative budget for planning his care under SDS. It was a range budget of between 25% adn 50% of the cost of the current service.
His mum explained that John psychiatrist, his GP and up to last week the social worker had been happy with his current service but on this new budget he would no longer be able to use the service. Here's a snippet from the conversation.
Mum: How did you arrive at this budget for John?
Social Worker: The computer told us.
Mum: How did the computer know what was needed to meet John's needs?
Social Worker: We feed lots of very complicated things into it and then it tell us what is a fair budget.
Only now after Mum getting external help is there a prospect of this budget being changed.
There used to be an old saying in the early days of computers if the data put into a computer was wrong, then the answer it fed out would also be wrong. The computer cannot make a judgement, it only produces results. Such stories as John's rarely make it into official reports but unless they are taken seriously we are storing up problems.
If we are serious about transforming social care in Scotland we perhaps need to be a little better about thinking about real people and a little bit less obsessed with the latest computer system or spreadsheet.