How the UK government replaced disability services with surveillance tech
- Illustration by Aigerim Ismagulova
When Ruth Cherry goes to bed at night, she’s watched by a camera system. Motion sensors track her every move. Microphones listen to her breathing. If she wakes up and makes a noise, the system activates. A government-employed responder, watching several miles away from Ruth’s home in Glasgow, will ask her what she wants over a speaker system. But Ruth has a disability and can’t talk—so she’s unable to reply. If the government worker decides she’s in distress, someone will be dispatched to her house.
Ruth was born with hydrocephalus, a condition where a build-up of fluid exerts pressure on the brain. As a child, she was diagnosed with learning disabilities, epilepsy and autism. She is unable to speak, wash herself, feed herself, or go to the toilet alone, and her family say she requires constant care.
In January, after nearly three decades of living at home with around-the-clock care, Ruth moved out aged 26. The government offered her a house of her own in the Glasgow suburb of Thornliebank, with a spare room for a live-in carer. Ruth loved horseriding and going out on day trips with her carers—she’d had a taste of independence, and was ready for more.
“We saw this as a move that would mean Ruth was set up for an independent life,” her brother David Cherry said. “Regardless of what happens to me or her mum or dad. And also so they could have a bit more of a life again and have some rest—they’ve given up a lot and worked very hard to be carers for my sister.”
Ruth’s parents had one condition: they would only allow her to move if she wasn’t to be “subjected to technological overnight care.” These systems, known as “telecare,” had initially been installed in the properties of elderly people across Glasgow in a bid to reduce the need for overnight carers. Properties are fitted with a tablet, motion sensors, microphones and cameras from various private technology companies. Now they were being used for people with disabilities, too.
East Renfrewshire Council seemed to agree to their request, and Ruth moved in.
Since 2006, when the Scottish Telecare Development Programme was first announced, several million pounds have been invested in the systems. In the UK, around 175,000 people have been provided with telecare systems by local authorities and housing associations.
For many, a home with sensors, cameras and microphones helps them regain some of their independence. But Ruth’s inability to communicate, complex needs and frequent distress means the tech system isn’t adequate.
But during the summer, the council told Ruth she would have to go through a two-week trial period with the system after all, to assess her needs and decide whether the technology was suitable for her. “The way they put it, it wasn’t actually going to be put in: it was just part of the policy, it was absolutely necessary,” Cherry says. So the family reluctantly agreed to go ahead, hoping Ruth’s twenty-four hour care with a live-in carer would continue after the trial.
But when the trial came to an end, the council came to a shock decision. They decided that the tech system was right for Ruth, and they would implement it in six days’ time. “That was difficult,” Cherry says. “There was no discussion, which my mum found very distressing. All along it was surprises and sudden changes.”
Ruth is one of many people with disabilities whose lives and care have been changed by technology over the last twenty years. From the installation of unwanted tech-carer systems to the use of algorithms in welfare claims and the shift to online-only services, tech is having a bigger impact on the lives of vulnerable people than ever before.
The disability tech market is booming; one report suggests that the industry will be worth $26bn by 2024. Many of the start-ups in this field are working exclusively with consumer tech, creating software to help deaf people make phone calls, for example, or improving on power-assisted wheelchairs.
Others are working with state departments—U.S. based company UiPath has recently been contracted by the Department of Work and Pensions, responsible for social security in the UK, to “reduce costs and increase efficiencies” by automating routine tasks. UiPath “robots” were employed to tackle a backlog of 30,000 pension claims. UiPath said it would have taken a human “several thousands of hours” to deal with the claims. The automated system performed the task in two weeks.
The United Nations has described the UK government’s rollout of some of these cost-cutting measures as “evidence of grave and systematic violation of the rights of persons with disabilities.” Earlier this year, in his final report on the impact of austerity on human rights in Britain, Philip Alston, the UN rapporteur on extreme poverty, said UK ministers were in a state of denial about the impact of their policies.
Impacts can be “really negative, really fast”
Ruth is now left alone for up to ten hours a night, and though her mother sometimes sleeps in the room intended for her overnight carer, she’s been told not to interact with the system in case she interferes with any of the sensors.
“She couldn’t face leaving Ruth alone,’ David Cherry says. “But part of that was that the social work [department] said she wasn’t allowed to interact with the technology at all, or respond to her cries or check on her. She has to just let her cry.”
The technology itself hasn’t been foolproof, either. On one occasion, the telecare system was shut off earlier than intended, leaving Ruth alone and uncared for forty-five minutes. Nothing happened, but her brother puts this more down to luck than anything else.
Cases like Ruth’s are extreme. But there are other, more everyday examples of life being made difficult for those who don’t have access to a computer or have low digital literacy.
Government cuts to public services have led to a shrinking of the workforce. As of March 2018, the public sector represented 16.5% of the total UK workforce, the smallest share since comparable records began in 1999. Online platforms have replaced social workers who once addressed local needs.
“So many of these services are just online now,” said Jo Mitchell, a welfare benefits advisor at the Disability Law Service, a charity that provides free legal advice to people with disabilities. “Online housing benefits, council tax exemptions, changes to address… even to download a form you have to be able to have access to a PC.”
Mitchell said a few of her clients are able to use local libraries, where there is limited support available. For many people, “it’s just impossible.”
These everyday barriers may seem a million miles away from more extreme situations like Ruth Cherry’s. But Dr. Joanna Redden, co-director of Cardiff University’s Data Justice Lab, believes it’s important to “not differentiate between technological replacements of services and frontline workers.”
In other areas of Britain’s welfare state, algorithms are also replacing people. The UK’s Department for Work and Pensions now spends £8 million a year on building what have been dubbed “welfare robots”: automated systems that assess citizen’s benefits applications. Instead of a human, the government will task this new “intelligent automation garage”, built by the U.S. company UiPath, to judge whether citizens are telling the truth about their housing and childcare costs.
It isn’t yet clear what will happen if a citizen’s claim is rejected by the system. “The impact [of such systems] can be really negative, really fast, and leave people feeling completely powerless because of their lack of ability to find recourse,” Redden said.
“Technology can be absolutely amazing for disabled people,” Andy Greene, an organizer with activist group Disabled People Against the Cuts, said. “If you look at social media, even—it connects a lot of disabled people who are marginalized and isolated from their communities.”
“But as usual, we only embrace things if it seems to turn a profit, and that seems to be the overriding principle when we decide whether or not technology will be used.”
Greene also points out that people with disabilities are excluded from the conversation around how such technology is used.
If care is parsed through a profit-making lens, it’s “never going to be about us, or about making our lives easier,” Greene concluded.
The Cherry family are still fighting for the telecare system to be removed and for the reinstatement of full-time overnight carers for Ruth. Nearly 100,000 people have signed a petition advocating that Ruth have a carer instead of the tech system. Ruth’s doctors, the fire service and her local Member of Parliament have all spoken out against the council’s decision.
East Renfrewshire Council, who did not respond to requests for comment, have told the family it is “no longer willing to discuss” the issue, and have referred the family’s lawyer to the Scottish social services ombudsman, which investigates complaints. They will now have to go through a lengthy complaints process before they get an answer.
“If someone with complex needs like Ruth doesn’t get looked after by humans at night – who does?” said Cherry. “Who does get looked after by actual people anymore?”
The story you just read is a small piece of a complex and an ever-changing storyline that Coda covers relentlessly and with singular focus. But we can’t do it without your help. Show your support for journalism that stays on the story by becoming a member today. Coda Story is a 501(c)3 U.S. non-profit. Your contribution to Coda Story is tax deductible.