Hundreds of people with learning disabilities are “living” in hospital or hundreds of miles from families because of a lack of support and suitable accommodation, a report has warned.

The charity Enable Scotland said it was aware of one case where a woman had been in an NHS unit for 60 years and described the situation as a “national scandal”.

Another man was offered a placement more than 400 miles away from his family before advocates stepped in.

By the time social workers are aware of an individual who requires support, 
the situation is often at crisis point, Enable said, and decisions are more likely to be made in haste without adequate planning.

While “strenuous” efforts are made by some Health and Social Care Partnerships to help people to live in their own communities, others are said to be systematically sending people away.

If suitable support cannot be identified, even far away from their local community, then there is a risk individuals are admitted to Assessment and Treatment Units where they can remain indefinitely.

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John Feehan, who has a learning disability, said: “Some  people think people who have a learning disability are not able to live in local communities like everyone else. 

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“They [the authorities] think it is easier for them to be locked away in hospital, or to live with lots of other people who have a learning disability.  That isn’t true. It is only because the right support is not there.”

An estimated 175,000 people have a learning disability in Scotland and, of those, around 24,000 are known to local authorities.

In 2000, the Scottish Government published The Same As You?, the first major review of learning disability services for several decades, which established the right for everyone with a learning disability to live in their own homes and communities.

It also called for the closure of all remaining long-stay hospitals by 2015. 

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This was successful and the Social Care (Self Directed Support) (Scotland) Act reaffirmed the rights of people to live in their own home.

However, Enable says a consequence of profit-driven social care is that the specialist infrastructure needed to make this pledge a success is “simply not there”.

Providers say it can be challenging to recruit staff to support people who have complex care and support needs or exhibit challenging behaviour.

The last major report was published in 2018, while in England the Care Quality Commission published Out Of Sight – Who Cares? in 2020, which made 17 recommendations and there have been follow-up reports.

At least 1,011 adults with learning disabilities in Scotland are said to be in out-of-area placement, while 294 adults who have a learning disability or autism are in NHS Scotland inpatient units. 

A further 40 adults with learning disabilities or autism are living outwith NHS Scotland.

The charity estimates the support given by family members and other unpaid carers would cost £114,000 in equivalent state care. Many parents who became full-time carers are now elderly themselves.

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Enable’s MyOwnFrontDoor campaign is calling for urgent change to ensure all adults with learning disabilities are supported to live in the community of their choice by 2023. 

Jan Savage, director of Enable Scotland, said: "It is a national scandal – hidden in plain sight.  

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“Clear and decisive action is now required to adopt a ‘Community First’ principle to end the practice of people being sent out of area; to nationally invest in high quality, consistent, specialist social care support to be available in every community; and 
to stop building new multi bed units for people who have a learning disability.  

“These are not the solution – they perpetuate the problem.”

Mental Wellbeing and Social Care Minister Kevin Stewart said: “We acknowledge there are continuing challenges around people with learning disabilities and more complex care requirements who have spent an unacceptable amount of time in assessment and treatment units. Hospital is not a home.  

“That is why in March 2020 the Health Secretary established, with Cosla [Convention of Scottish Local Authorities], a working group to improve delayed discharge and reduce inappropriate out of area placements for people with learning disabilities and complex needs.

“In 2021 we provided moe than £20 million of funding to local health and social care services to significantly reduce out of area placements and hospital stays by 2024.”