An autistic woman with a learning disability was unjustly confined in a mental health hospital for 45 years, starting when she was just seven years old, according to an investigation by the BBC. The woman, known only by the pseudonym “Kasibba” to protect her identity, spent the majority of her life in long-term segregation, including a 25-year period spent isolated from others.
Kasibba, who is non-verbal and had no family support, was trafficked from Sierra Leone before the age of five. She lived in a children’s home briefly before being placed in the hospital at the age of seven. Over the years, hospital staff labeled her as “dangerous,” claiming that a single incident from her youth—where she scratched another patient in a chaotic situation—justified her long-term segregation.
Dr. Patsie Staite, a clinical psychologist, first learned of Kasibba’s situation in 2013 during a routine review of her care. Dr. Staite spent nearly nine years advocating for Kasibba’s release, leading to the formation of a “freedom committee” in 2016, consisting of healthcare professionals and advocates who fought for her to be moved into the community. Despite the lack of mental illness or violent tendencies, Kasibba had been detained for decades.
“I had never seen anyone living in such an inhumane situation,” Dr. Staite recalled, describing the conditions in which Kasibba was kept. Often confined for more than 23 hours a day, Kasibba’s cell-like room had a hole in the fence so she could view passersby from her enclosure.
In 2022, after years of advocacy, Kasibba was finally released, thanks in part to a detailed report from Dr. Staite and the efforts of independent advocate Lucy Dunstan. Dunstan, who was appointed to represent Kasibba, was shocked by the stark conditions of her living situation. “She was just lying on the settee, in a very empty room. Her life was completely impoverished,” Dunstan said.
Kasibba is now in her 50s and resides in a supported community setting. With the assistance of care workers who communicate through gentle touch and clear gestures, she has begun to engage with her surroundings more actively. “She has the most amazing sense of humor,” said her care manager. “She’s a beautiful human being.”
The Department of Health and Social Care has expressed concern over the ongoing detention of individuals with learning disabilities and autism in mental health hospitals. “It is unacceptable that so many disabled people remain in institutional settings,” a spokesperson stated. They also emphasized that reforms to the Mental Health Act are intended to prevent such inappropriate detentions.
Despite these promises, over 2,000 autistic individuals and those with learning disabilities remain detained in mental health institutions across England, including nearly 200 children. Progress has been slow, and the government’s stated goals to reduce reliance on inpatient care by 10% in the next few years have been met with skepticism from advocates like Dan Scorer of Mencap. “Hundreds of people are still detained who should be supported in the community,” Scorer said.
The government’s current efforts include new legislation in the form of the Mental Health Bill, which aims to ensure that individuals with learning disabilities and autism who do not have mental health conditions will no longer be detained. However, the government has stated that changes will not be implemented until sufficient community support is available, leaving many individuals still at risk of institutionalization.
In response to Kasibba’s case, Jess McGregor, executive director of adults and health at Camden Council, expressed deep regret, calling it a “tragedy” that Kasibba spent most of her life in a hospital. “I’m personally sorry. She shouldn’t have experienced what she did,” McGregor said.
The NHS mental health trust responsible for Kasibba’s care maintained that its services were not in question, and the hospital was rated as outstanding by the Care Quality Commission. The trust also noted that since 2010, efforts had been made to transition long-term residents to more appropriate community care, but legal challenges from other patients’ families had delayed these plans.
Kasibba’s release highlights the ongoing issues surrounding the treatment and detention of people with learning disabilities and autism in the UK. It serves as a stark reminder of the need for systemic change to ensure that individuals like Kasibba are not forgotten in the system.
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