Last week, the BBC shared the devastating story of Kasibba, an autistic woman with a learning disability, who was wrongly detained in a mental health hospital for an astonishing 45 years, having been admitted at the age of seven. Kasibba spent 25 of those years in long-term segregation without any medical reason, a stark reminder of the immense challenges and barriers faced by autistic individuals and those with learning disabilities within our current care system.
Kasibba’s story exposes the systemic failures that continue to lead to unjust detentions, impacting over 2,000 individuals in England, including around 200 children.
The conversation surrounding how we support working-age adults who need life-long support is crucial. Cash-strapped councils need system-wide solutions focusing upon an integrated approach to health, social care, and housing—it takes all three to achieve a successful and sustainable discharge from hospital.
Without this, thousands of people will continue to be detained by the state, irrespective of changes to legislation for autistic people and those with learning disabilities. As Alexis Quinn makes clear in her interview on BBC Woman’s Hour, changing the Mental Health legislation alone will not change the day-to-day reality.
For many individuals, institutionalisation means spending years—sometimes even decades—isolated from their families, friends and communities. This prolonged separation often leads to loneliness and social exclusion while depriving individuals of autonomy and personal interdependence. It erodes their sense of connection and belonging, impacting their overall wellbeing and mental health, leading to significant health inequalities.
There is a different way
At Glassmoon Services inception, we knew we were creating a specialist care and support organisation. We wanted to focus on health, wellbeing and quality of life for the people we would be supporting whilst creating meaningful work for our frontline teams. Our aim was to be commissioned to support adults and young adults who needed one-to-one support to live in specified accommodation which met their physical, emotional and sensory needs.
In the context of Kasibba’s story, our story of conviction came when our Co-founders were asked to visit a young person with autism and a learning disability, detained in a secure C.A.M.H.S unit, hundreds of miles from home. The young person had only seen their family twice in two years and was isolated from all meaningful human contact.
Imagine that is your son, daughter, niece, nephew – if they have special educational needs and or disabilities that could well be the devastating future that awaits them. Of the 2,000 people detained who are mentioned in the article, 200 of them are children, as Kassiba was when she was first detained at age 7.
When we started, a Commissioner in Cornwall Council along with an NHS Commissioning colleague asked us to do an initial assessment.
With hindsight, those Commissioners would have known that we were one of a tiny pool of providers willing to go to the hospital and meet this person. This young adult was described by health professionals as having a “hefty reputation” – not quite as offensive as Kasibba being inaccurately described as an “eye gouger” but stigmatising, nonetheless.
Over many meetings with Commissioners, we shared our vision – a proof-of-concept wellbeing model of human-rights, and trauma-sensitive service provision. A provision delivered by frontline colleagues that is worthwhile, with a sense of purpose and with the potential to make a difference to people’s lives. We were the solution they needed.
To cut a long and winding story short, after 7 months of transition planning, 61 meetings, and finding an over-priced bungalow in the southwest to convert into suitable accommodation, the young person left the hospital and has literally never looked back.
Since then, we have supported people who have been detained from 15 months to 13 years to 37 years, and one person having been in two separate national health and social care scandals. Through our work, our mission has become to support individuals transitioning from long-term institutional units or stop them from being admitted in the first place.
Good news or not!
Four years on, the young person is living in their home county in the southwest, attaining positive outcomes by every conceivable measure – health, wellbeing, quality of life, as well as financial and non-financial benefits being delivered to the council. Despite this, cash-strapped Commissioners are at risk of losing sight of both the strategic and pragmatic approach they took to ensure a sustainable service in the community which the young person will require for the rest of their life.
We recently submitted a Social Return on Investment report using the evaluation frameworks outlined by the Treasury for evidencing services paid for by the taxpayer. Unfortunately, the Council is yet to engage and get round the table to discuss how the service remains sustainable.
Choosing to treat specialist social care provision with the same approach as generic provision relative to funding and process, puts specialist provision at risk. This may well result in people who are settled and living successfully with commissioned support ending up back in institutionalised settings.
In order for Kasibba’s story not to be replicated ad infinitum, the path forward has to be about systemic, wholescale reform. We must continue to advocate for those who cannot advocate for themselves and push for change. The RRN‘s Alexis Quinn highlights these issues on the BBC’s File on 4, highlighting both risks and opportunities within ongoing mental health reforms.
Transforming the lives of those who have suffered under outdated, restrictive systems is absolutely possible, – with engagement, collaboration and trust, support providers and commissioning authorities can together build the bridges to move people out of Institutions. However, building the bridges to a life beyond institutional care and support into the community is only the first part of a person’s journey. True success is not simply a person coming out of a hospital, it is a person staying out.
Creating the correct ongoing care and support, housing and funding conditions with onward mapping must be a systemic imperative. Any bridge is only ever at its most effective when connected to safe, maintained and well-funded networks and highways.