A young disabled woman says she has been “punished for a crime she did not commit”, as she waits for written confirmation that she can finally leave the care home where she has been trapped for nearly a month.
Lakhvinder Kaur, who is still facing an eviction notice from the care home in east London, said she feels that she is being treated “like an animal that has no say in their life” and has been forced to live in “solitary confinement”.
Last week, Disability News Service (DNS) reported that the 28-year-old (pictured) was facing eviction because of her demands that she be supported by female staff who are properly trained to assist with her personal care needs.
The care home had also objected to her organising birthday parties, and occasionally inviting friends over for late-night drinks.
Newham council had tried to force her to move to another care home, even though she insisted that it would be inaccessible and unsafe for someone with her impairment – spinal muscular atrophy (SMA) – and her significant and complex support needs.
But she refuses to leave until the council allows her to live in her own home with her own tenancy and a package of direct payments that reflects her need for support and allows her to employ and manage her own well-trained staff, something she has been trying to achieve for seven years.
She told her social worker this week: “My right to achieve independent living under article 19 of the UN Convention on the Rights of Persons with Disabilities has been violated for far too long and I am not asking for something I am not entitled to, and I hope you can appreciate this.”
The care home where she currently lives previously told her that if she left the building she would be locked out and not allowed to return.
That threat has now been lifted, with the help of her solicitor, Sarah Lerner, after the council agreed to temporarily reinstate her care package, although Kaur said she would still not risk leaving the building until she received the promise in writing.
This means that she is still unable to return to her customer service job in the hotel industry.
And it is only in the last few days that she has been able to eat and shower according to her wishes, even though her care package is still far too small for her needs.
The care home appears to agree, as it has now raised a safeguarding concern with the council because it believes the support it is funded to provide is not sufficient.
Lerner, a consultant solicitor in family and community care law with the firm Edwards Duthie, told DNS that she was “shocked” to discover Kaur’s situation when she visited her.
She said the situation appeared to have resulted in potential human rights and Care Act breaches, although the council had now reinstated the care package while it continued to seek a more appropriate placement.
Lerner said: “What I was personally shocked about was that she was in a situation where she could not come and go as she pleased, or get to work.”
She said her firm had been “inundated” with other cases of disabled people where there were concerns about inadequate care packages.
Kaur has also been contacted by the disabled crossbench peer Baroness [Jane] Campbell, who also has SMA and is hoping to support her in her bid to secure a home of her own and a package of support that will allow her to live independently.
DNS understands that Baroness Campbell is having high-level talks with both the Care Quality Commission and the Equality and Human Rights Commission about the case.
Kaur said: “These past three weeks have been hell. I was punished for a crime I didn’t commit.
“Now I am apparently allowed to leave the premises but as I have not had written confirmation I won’t risk it.”
After nearly a month of being trapped in her rooms, she said her confidence had been hit, and she was concerned about how she would cope with everyday activities like crossing the road and catching public transport.
She said: “If I can receive this unjust treatment only god knows what’s happening to those who don’t have a voice or the amazing support I have had.”
In addition to the support from her solicitor, and the intervention of Baroness Campbell, her story was first brought to the attention of DNS by disabled activists Michelle Daley and Eleanor Lisney, from the disabled women’s collective Sisters of Frida.
Without all that support, she said, she believes she would have been abandoned in what was an “horrific situation”.
She said: “I feel like I’m an animal that has no say in their life, and if I do try to have a say I’m labelled as difficult, problematic, challenging or even a troubled case.”
A spokeswoman for the care home confirmed that Kaur’s care package had been reinstated by the council, and that although the eviction notice was still in place, she was now “free to leave the home and return”.
She said in a statement: “We always aim to provide the best quality of care and support to every one of our service-users and firmly believe we have done so in this case.
“If the home is not meeting the needs of an individual then we work with the service-user, local authority and the wider multi-disciplinary team to assess their needs and how these can be best met.
“This may mean a revised care package or alternative accommodation that better suits the service-user.”
Newham council had not commented by noon today (Thursday), although last week it said it was “working closely with Ms Kaur to ensure the care and support she receives meets her needs” and was “actively exploring” her request to be able to live independently, although finding a solution was “not easy” because she had “highly complex care needs”.
Kaur is now hoping that she will be able to use her own experience to help other disabled people who have faced cuts and restrictions to their support packages with their right to live independently.
She said: “There are probably many more people who are being penalised for speaking up, and facing a similar situation to mine, and don’t know how to find their way out of hell.
“I will not stop just with my case, but I want to help others who don’t know the way out.
“We are not animals or state property, we are individuals who have a right to live and not just survive.”