A Lanarkshire-based charity launched a campaign this week to unlock the right of hundreds of adults with learning disabilities to a home of their choice in a community of their choice, close to the people they love .
As the largest member-run charity in Scotland, ENABLE Scotland is calling on society to tackle the ‘human rights scandal’ faced by people with learning disabilities.
ENABLE Scotland’s latest campaign, #MyOwnFrontDoor, is being led by the Eurocentral-based charity’s network of 12,000 members and supporters to tackle what it describes as a ‘level of discrimination we don’t expect and wouldn’t expect other people in our society to bear.”
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Due to the lack of support to live in their own communities close to loved ones, official data reveals that over 1000 adults have been sent by Scottish local authorities to live ‘out of area’ i.e. not in their local authority patch. Beyond that, another 67 people live in the hospital – and 22% of those people have been there for more than a decade.
Although this problem was highlighted in a 2018 Scottish Government report, which recommended better specialist social support to help these people live in the community of their choice, there has been no monitoring of progress and ENABLE Scotland fears the situation will deteriorate further.
The charity’s campaign calls for urgent action to end hospital life for people with learning disabilities and for immediate plans to be put in place to ensure that all those on delayed discharge or those who have been moved ‘out of the area’ are supported to return to live in the home of their choice and the community of their choice, near the people they love by 2023.
The charity is already helping 6,000 people to live independently across Scotland, including some who previously lived in hospital or other facilities for many years, or fought for their rights to live closer to their families.
Launching the campaign, John Feehan, an adult with a learning disability who is an active member of ENABLE Scotland, said: “It can be so hard to speak up when you have a learning disability.
“It’s even harder to get people to listen. That’s why I’m speaking out. It makes me so angry that other people who have a learning disability are stuck in hospital or forced to live away from their families. It’s been hard for too long now.
John continued: “Some people think that people with a learning disability are not able to live in local communities like everyone else.
“They think it’s easier for them to be locked up in the hospital, or to live with a lot of other people who have a learning disability. That’s not true. It’s only because there isn’t the right support – it’s not anyone can live anywhere with the right support.
“If they don’t want to be where they are, people need help moving back to live near their families or getting out of hospital – right away.”
ENABLE Scotland is the country’s leading charity for people with a learning disability, with branches across Scotland including Airdrie, Bellshill, Cumbernauld, East Kilbride, Newmains and Rutherglen.
Its director, Jan Savage, said: “This is a human rights emergency. It’s a national scandal – hidden in plain sight.
“People who have a learning disability – brothers, sisters, sons and daughters – are forced to live away from home, to ‘live’ in hospital or to live in care facilities where they are unwell. comfortable and unhappy.
“I’m sure people will be shocked to learn of the situation in which our fellow citizens find themselves. But let them be reassured that better is possible. Clear and decisive action is now needed to adopt a ‘community first’ principle to end the practice of sending people out of the area, to invest nationwide in specialist social support high quality, consistent and available in every community, and to stop building new multi-bed units for people with learning disabilities.
“These are not the solution – they perpetuate the problem.”
Jan continued, “We can’t wait any longer. People with learning disabilities are subject to a level of discrimination that we would not want and expect other groups in our society to experience.
“We are determined that this campaign will start a movement for change as each of us stands up for the human rights of all people with learning disabilities in 2022. The keys to unlocking their own front door are in our hands.”
Radical Visions supports the campaign, which provides practical assistance to citizens, families, organizations and society at large to promote and practice the values of inclusion.
The organisation’s director, John Dalrymple, said: ‘Everything we know about the disastrous effects of segregation and exclusion and all the evidence we have about good social care practice argues for an immediate halt placing people in institutions.
“Everything we say we believe about basic humanity, independent living and universal human rights compels us to support campaigns like #MyOwnFrontDoor and ensure that in the future, no one is denied housing.”
As part of this campaign, ENABLE Scotland is offering support and advice to anyone or family affected by this issue, and asking members of the public to raise it directly with their local MSPs.
One of those people is Nova, a 44-year-old woman who is fun and friendly, and has a killer sense of humor.
She also suffers from a moderate learning disability, autism, Tourette’s Syndrome and epilepsy, all of which impact Nova’s ability to live her life independently.
As a child, Nova lived in a residential care facility and, as an adult, evolved around different models of support in various places.
More recently, Nova lived for several years in England, where she had her own flat but was cared for by 24-hour nursing staff.
Following a return to the family home in Scotland due to Covid-19, Nova made the decision to permanently move north of the border in October 2020 to be closer to family.
It was agreed that Nova would temporarily live with her sister until accommodation and support could be arranged.
Although social work immediately agreed to a full support package and budget, finding accommodation for Nova was more difficult. Options around shared living have been offered, as has a retirement home.
Throughout her life, Nova has seen many people make decisions for her that weren’t always the right ones. Basically, Nova wants to live alone. She tried to live with other people, and she didn’t like it.
Nova was adamant that this was not what she wanted, and her family helped her speak for herself. They didn’t know how to navigate the system and found their way to ENABLE Scotland’s Family Connect service.
Through extensive advocacy and partnership work within family, housing and social work, the panel authorized a budget for Nova, based on round-the-clock support, and a new apartment near her family was approved. been identified.
After 12 months of wanting to be in her own apartment and the impact on her own family of around-the-clock support, Nova now has the keys to her own front door and has started 2022 in her own home.
To join the movement, take action, share, speak out and learn, go to www.enable.org.uk/myownfrontdoor.
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