By John Pring Disability News Service 9th November 2017
A young disabled woman has been unable to leave a residential home for nearly three weeks because its managers are trying to evict her for complaining about her care, and for her attempts to enjoy a proper social life.
Lakhvinder Kaur, who has spinal muscular atrophy, says she has been “fighting non-stop” for seven years to secure a proper care package that will keep her safe, and allow her to live in her own home, manage her own support, and enjoy the typical social life of a young woman in her 20s.
Instead, she has had to move from one inappropriate care home and supported living setting to another since she turned 21.
Her current care home has raised objections to her organising birthday parties, and occasionally inviting friends over for late-night drinks.
It has also objected 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.
Because she has nowhere else to go, and fears moving to another care home that she believes is unsafe for her – which her council insists is suitable – Kaur is refusing to leave the building.
Managers at the home say they will change the security code on the entrance if she leaves the building, and have already tried twice – unsuccessfully – to persuade the police to evict her.
The care home’s threat – and her lack of a support package – means she is unable to attend the funeral of her cousin, who died last week in Wales.
She has also now been told that staff will only provide her with reheated frozen food – which puts her health at risk – until she leaves.
Kaur says the forced move to a second care home would put her social life, her job – and her life – at risk.
She is being supported by the disabled women’s collective Sisters of Frida and two of its co-founders, Michelle Daley and Eleanor Lisney.
They say her “shocking” story “raises serious questions about not just the quality and services of many care homes across the country – particularly for people who are scared to speak out about their conditions – but about how their customers are respected and valued”.
All she wants, she says, is to live in her own home with her own tenancy, with a package of direct payments that reflects her significant support needs and allows her to employ and manage her own well-trained support staff.
But she is now being forced to move to yet another care home, one she believes is so inaccessible that it puts her safety at risk, and even though its managers have said they do not believe they can meet her high support needs.
In a complaint she has lodged with Newham council, she says: “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.”
She currently receives just three-and-a-half hours of support a day, and another one-and-a-half hours at night, which 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.
She was even told by her 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.
The care home where she currently lives wants to evict her because it cannot cope with her demand that the staff who provide her care must be appropriately trained, which involves learning the strict, step-by-step routines that are needed to keep her healthy and safe.
Managers at the home have also said they cannot cope with her attempts at enjoying a social life.
They complained that she organised a birthday barbecue last year, which took place in the building’s car park and was attended by friends and fellow residents.
They also complained that she invited 20 friends to her flat for a late-night party, and that she has had friends visit her after her “curfew”.
Kaur said: “They have given me a ‘curfew’ of midnight, but I work, my friends work and sometimes we finish at 11pm.
“It has happened three times while I have been here that my visitors have left at 4am.
“I am 28 years old, not 12. I feel like I have lost out on my 20s.”
She fears the council’s failure to provide her with the support package she needs will make it impossible to continue with her customer service job in the hotel industry.
Her boss – who she says has been very understanding – has placed her on annual leave while she tries to secure a reasonable support package and an accessible place to live.
The care home that the council want her to move to is even further from her friends and family, and she says it is unsafe and inaccessible.
The bathroom is too small for the equipment she uses, and has no step-free shower, and the system to call for assistance is inaccessible to her, so she will be unable to call to be turned in bed at night, which must be done to prevent fluid draining into her lungs and causing potentially fatal chest infections.
There is also no specialist bed, which she needs to support herself, and she would be unable to operate the locking system on the door to her room.
Even the main entrance to the home would be inaccessible to her without assistance.
Daley and Lisney told DNS that, as a young disabled Asian woman, the discrimination she is facing “crosses many equality strands”, and violates both article six (on disabled women) and article 19 (on independent living) of the UN Convention on the Rights of Persons with Disabilities.
They said they believed that her experience was “not a one-off” and “reinforces what we already know, that when residents speak up about poor and unfair services they are highly likely to be evicted.
“It’s easy to evict a care home resident because they have no tenancy agreement. They are basically living under a hotel service.
“The reality is that a care home owner does not want complaining customers.”
They questioned why she was not being offered the opportunity “to live in her own home and have her own care package, which she has control of”.
They added: “The worrying thing here is the local authority appears to be not taking its responsibilities seriously.
“Their recommendation is to refer Laki to another care home, which Laki believes will put her health and safety at risk.
“Laki is a young disabled Asian woman who has particular concerns, based on her needs and identity, which must be taken seriously and should not be ignored.
“One of the things which led to her eviction was that she requested female staff, and for them to be trained in assisting with her personal care needs.
“By doing so she has been labelled as problematic – this is shocking!”
They said they feared the situation she is facing increases the risk of harm to her health and well-being, and could lead to her losing her job.
They said: “She is in fear that if she leaves the care home she will not be able to regain access because the key code will be changed.
“She has been told to present herself as homeless, but how can she do this when her care package is locked into the care home and she fears that she will have no-one to assist with her personal care needs?
“This is a horrible story which we would not be expecting to read about in the UK.
“Newham is a flagship borough for its work on inclusion and in this case we are disappointed that it has seriously let down one of its residents.”
A spokeswoman for the care home said in a statement: “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.”
A Newham council spokeswoman said: “We have been working closely with Ms Kaur to ensure the care and support she receives meets her needs.
“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.
“We are investigating whether direct payments could assist with this and will update Ms Kaur once we have completed all our assessments.
“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.”
But Kaur said: “I am totally devastated by the way my case is being treated.
“I am being placed out of borough and being forced to live in a care home with people three times my age, placing me at risk of losing my job and forcing me to compromise my health, safety and well-being.”