Millions not spent on helping locked-in patients
The majority of a £20m fund which was created to get people with learning disabilities out of institutional care has not been spent, according to a new report.
The Scottish Human Rights Commission (SHRC) said it could only trace £14m of the money – of which £12.5m was still unspent. It does not know what happened to the remaining £6m.
Its report also said there were "clear failures" in the Scottish government's plans to move the majority of locked-in patients out of hospitals and inappropriate placements to be cared for in their own homes.
The Scottish government said it was committed to delivering the changes that were needed for people with learning disabilities.
For decades, ministers have been promising to ensure people with learning disabilities and autism will be supported to live in their own homes in their communities - but hundreds are still stuck in hospital.
Another study, published this week by the Mental Welfare Commission, found that 55 people with learning disabilities in Scotland had been stuck in hospital settings for more than 10 years.
In February 2022 the Scottish government promised to move the majority out of hospital by March 2024.
That hasn't happened.
What did the report find?
The SHRC, an independent public body, said that people were still being admitted to hospital for having a learning disability.
It says this breaches their human rights and people should only be admitted where there is a clear therapeutic purpose.
It also says that Scotland's existing "structures, policies and interventions" are "currently inadequate" to get people out.
According to the SHRC, urgent action and new laws are needed in Scotland to protect the right to independent living because this is being breached daily.
Despite the official policy to cut institutional care altogether, the number of hospitals and units that provide multiple beds for adults with learning disabilities has increased from 323 in 2021 to 345, rather than reducing, the report said.
And people with autism are often not counted.
What has happened to the funding?
In 2021, £20m was made available by the Scottish government specifically to support people with learning disabilities to move into their own homes.
In its report, the SHRC said that three years later it could only track £14m of that funding.
From the accounts it could trace, the commission established that only £1.4m of that money had been spent.
It believes that much of that funding has been misspent.
SHRC chairwoman Prof Angela O'Hagan said some of the money had not been used in the ways that were intended, such as being spent on refurbishing parts of existing institutions.
The researchers said that £12.6m had not been spent, and that the other £6m may have been spent or may sit in a reserve fund elsewhere.
They say it is not that the money has gone missing, but that it is not clearly visible in the annual accounts of local authorities.
It could not identify allocations in a number of council areas, including Glasgow, Edinburgh and Highland.
The SHRC says this lack of transparency and accountability needs to be addressed.
How did we get to this point?
Thousands of people with learning disabilities were living in long-stay hospitals prior to the 1990s, when it was agreed that this was inhumane.
The Scottish government published The Same As You? report in 2000, which established the right for everyone with a learning disability to live in their own home and community.
It said: "People's homes should not be in hospitals."
In 2018, a Scottish government-commissioned report, Coming Home, found that hundreds of people with learning disabilities were still stuck in hospitals or were living hundreds of miles from home.
Four years later, the follow-up report pledged to significantly reduce the numbers living in hospital or far from home by March 2024 - but that has not happened.
Hundreds of people with learning disabilities and/or autism are still living far from family, locked in psychiatric wards or other units.
Why has it not happened?
Some experts cite shortages of social care staff, funding and appropriate housing.
Others say the complex needs of some of the individuals involved – many of whom have been living in institutions for years – are the main hurdle.
But experts are clear that everyone can live in the community with the right support.
For those with autism, experts say the loud, bright environment of a hospital psychiatric ward often exacerbates their anxiety and behaviour.
Some parents argue there has been a failure to listen to and meet the needs of the individuals and their families who know them best.
And hanging over all of this is the fact that many of these individuals are out of sight, behind locked doors.
Some of them are non-verbal and unable to express what they want or advocate for themselves.
The chairwoman of the SHRC said their rights are being repeatedly breached because they are "voiceless".
The SHRC report highlights the fact there is currently no specific mechanism to ensure families and individuals can make their own choices.
How can anyone be detained in hospital if they have not broken the law?
Some people were not moved into the community when the policies changed and have been stuck in hospitals for decades.
In many other cases, individuals could not access the help they needed in the community and ended up reaching a point of crisis where they were sectioned under the Mental Health Act.
At such a point those individuals can be detained in hospital.
Experts say that should only be a temporary measure for assessment and treatment. But the reality is that people get stuck in the system.
Who are the people still stuck in?
The latest figures show there are 1,545 people with learning disabilities and/or autism on the newly-created dynamic support register, of whom 486 are classified as urgent.
There are 195 in hospital, of whom 85 are delayed discharge.
When the register was first published in November 2023 there were 1,243 people on it with 455 classed as urgent.
But, one of the criticisms of the report is that people with learning disabilities in forensic units, including Carstairs, are not even included in the figures.
The four young men with learning disabilities and/or autism BBC Scotland highlighted in August 2022 are still locked in hospital.
Kyle Gibbon, who is now 36, has been in Carstairs for 15 years.
Gordon Hughes is 27 and has spent the past seven years in Carstairs.
Fraser Malcolm has been in Woodlands View in Kilmarnock for four years. He has been recorded as a delayed discharge for the past two.
Jamie Henry, who is 27, has been living in Woodland View for five years and is recorded as a delayed discharge.
What happens now?
The commission is demanding that the Scottish government publish the detailed accounts of where and how the money has been spent.
Scottish ministers have repeatedly said that having people with learning disabilities stuck in hospital is unacceptable.
They have started recording the numbers held but people are still not being moved into the community.
Local authorities have been told what to do and given some funding to do it but there is still little oversight and accountability.
Prof O'Hagan said action, not rhetoric, was needed at a national level.
Getty ImagesMental Wellbeing and Social Care Minister Maree Todd said she would carefully consider the findings and recommendations of the report.
"I want to put on record my commitment to delivering the changes that are evidently required for people with learning disabilities," she said.
"Coming Home is a priority for this government, this is why we have provided additional support and investment to health and social care partnerships to deliver improvements."
She said her government would continue working in partnership with the council umbrella body Cosla as well as local partners to ensure people were able to access the care they needed, were supported to live within their own communities and to ensure their human rights were upheld.
A spokesperson for Cosla welcomed the report.
"Local authorities are committed to full implementation of the Coming Home report and working to overcome the barriers to ensuring that everyone is able to live in an environment that is right for them and their families.
"We will take time to study the report and look to work with all stakeholders in the coming weeks and months."
'Tony is living proof it works'
Tony gets up every morning and puts on a tie – not because he is going to the office, but because for three decades he was not allowed to choose what he wore and was not allowed to wear a tie.
Tony fell off a bike when he was a toddler and suffered a brain injury.
As he grew and his behaviour became more challenging, he was put into hospital care.
He lived in long-stay hospitals, including Lennox Castle, for 30 years.
He was told by some doctors and professionals he would never manage in the community.
But charity C-Change was determined to manage his transition into the community.
When he left he was heavily medicated and required four care workers at all times.
But now he lives in his own home.
He has his own front door and one support worker.
Three years ago he came completely off his medication.
Every morning he chooses his own clothes, helps make his own breakfast and then mops his floors and washes his windows – he is so house proud.
With support he does art classes, buys his own groceries and goes out for lunch.
Ian Meikle has supported Tony for years.
"They said it would not work," he tells BBC Scotland.
"They said it would be impossible. That he would be back. And he is not back - he is thriving.
"He has got a good life. He has got freedom. He has got choice.
"We are not prison guards. We are here to support Tony. He makes his own choices on what he wears, what he eats.
"Tony is living proof it works. If you give out positive, positive will come back."