It’s Saturday evening. Lakhvinder Kaur is in her room eating dinner alone. She can hear the noise of elderly residents shouting in the dining room as staff try to calm them down. Her friends are going to a gig tonight, but as usual she can’t join them. She is 28, but her social life is practically non-existent.
Ms Kaur has spinal muscular atrophy, meaning she uses a wheelchair and needs round-the-clock support. Since an argument with her parents at the age of 21, she has lived in residential facilities. Most recently, she was moved to Sahara Care in Barking, where she is the second youngest resident, living among mainly elderly people with severe learning disabilities.
A receptionist in a hotel, Ms Kaur is proud of holding a job despite her disability and not receiving benefits. But her care package has been reduced in recent years, meaning she’s less able to get out and do things. Her care home sets a curfew for midnight, meaning she isn’t able to have friends round when she finishes work at 11pm.
“My friends go to concerts, gigs, boat parties, holidays, travelling. But me, I usually go to bed at 9pm. As I don’t have much travel support, I often can’t go out. I’m restricted on having friends round, so I just go to sleep,” Ms Kaur tells The Independent.
“Nearly everyone else in this home is three or four times my age. There is one 26-year-old but she has severe learning difficulties. Most of them have challenging behaviour. I do speak to them. There’s an old lady who is lovely so I colour with her. I try to have conversations with people, even though they’re not always mentally there.
“But there’s a lot of noise at dinner. I need to be comfortable where I am. I don’t want food flying around or somebody trying to grab my food, so I eat in my room alone.”
Ms Kaur currently receives just three-and-a-half hours of support a day, and another one-and-a-half hours at night. This means she only has enough support while at work for care home staff to take her there, support her to use the toilet just once, and then bring her home again at the end of her shift.
In June, she was effectively evicted from Sahara Care after making a number of complaints about the strict requirements and a lack of support. The home has reportedly raised objections to her organising birthday parties and occasionally inviting friends over for late-night drinks, as well as objecting to the 28-year-old’s demands that she be supported by female staff who are properly trained to assist with her personal care needs.
On her birthday this year, Ms Kaur said she informed staff that she was organising a gathering, which they agreed was OK. “It was going to be a barbecue, but because it was so cold, they decided to do it inside my flat. We got food, we got some drinks, some quiet music,” she said.
“There were about 20 people, but it was all contained in my flat. The staff didn’t need to assist with anything. One of my friends who I work with works as a chef and didn’t finish until 11:30. He came in just to say hello to me and have a quick drink, but a senior staff came in and said my party was supposed to finish at 9pm. He had to leave.
“I want to be a 28-year-old living like a 28-year-old, having the right care, but I’m treated like a child.”
Despite being told she has been evicted, Ms Kaur is refusing to leave the home, saying it will only see her sent to another residential home with even less of the facilities she requires to meet her physical needs.
“I’m just fighting. The local authority say there’s nothing they can do, but they’ve taken away one of the big factors in my life – the care package which allows me to have a shower the way I want to have a shower, go to the toilet when I need to go to the toilet. It’s dehumanising. Don’t all lives matter?” she said.
“This package covers human rights only. I feel isolated, depressed. I’ve gone through periods of feeling suicidal. What’s the point in being alive when I only have this?”
Faced with being moved to a different care home, Ms Kaur has raised the issue that it would place her far from her workplace. But she said that in response, she was told by staff in the care home and social service officers that she should “sort out her priorities” and that “work is not important right now” – a claim she rejected with vehemence.
“I’ve had my job for four years. I’m on a zero-hours contract but I’ve held it down for four years. My employer has always been very supportive. I can’t let my job go. It’s everything to me; it’s my independence. It makes me who I am. I earn my own money. I’m not on benefits. I’m trying to be independent,” she said.
“So then being told that I need to think about quitting my job really hurts. They want me to quit my job so they can put me anywhere.”
Ms Kaur said she was also told by a social worker that instead of receiving the support she needs to use the toilet, she should use incontinence pads or have a catheter fitted, even though she does not have a problem with incontinence.
“I was told by a duty social worker that I only needed to drink one glass of water a day, to avoid needing to go to the loo without support,“ she said. “They said you can catheter yourself, or you can wear a nappy. At that point I broke down. My mum didn’t train me to go to the toilet for nothing.”
Ms Kaur’s situation has come to light after it emerged that disabled people in the UK face being “interned” in care homes due to NHS new cost-cutting measures, in what amounts to a potential breach of their human rights.
The Equality and Human Rights Commission (EHRC) warned that caps to funding for NHS care outside hospital means disabled people may be prevented from living at home despite being well enough to do so, as they fail to take into account a person’s specific circumstances.
Separately, the Government was recently accused of “evading” disability rights by ignoring the recommendations of a major UN committee, in what has been described as a “continuing retrogression” of disabled people’s rights in the UK. The United Nations accused ministers of failing to uphold the rights of disabled people through austerity policies.
In a complaint Ms Kaur has lodged with Newham council, she wrote: “As an Asian disabled woman, being forced to live in a care home or supported living dehumanises me and disconnects me from my community and the everyday life of society, and hinders any aspirations and life chance opportunities I may have. This is my cry for help – I refuse to move from one care home to another care home.”
A Newham council spokeswoman said they had been working closely with Ms Kaur to ensure the care and support she receives meets her needs, saying in a statement: “She has an allocated social worker who has been supporting her to review all her options.
“We know she wants to live independently and this is something we are actively exploring. She has highly complex care needs and finding a solution to enable her to live independently in the community is not easy.
The spokesperson added that the council was in the process of investigating whether direct payments could assist with this and said they would update Ms Kaur once they had completed all their assessments, adding: “The current accommodation we have found for her is an interim measure until there is a long-term plan in place.
“A full assessment has been completed on the interim accommodation sourced for her and was found by the provider to be suitable for her needs. We will carry out an additional review of this accommodation.”
A spokesperson for Sahara Care said: “Providing residents with the most appropriate package of care is core to the ethos of our business. In this case the needs of one service user need to be balanced with the safe and efficient operation of the home for all other users.
“We have been working closely with the local authority which has found alternative accommodation with the necessary support that better suit the service user’s needs.”