More than 100,000 people have signed a petition demanding the government makes major changes to a bill that campaigners say would make it easier for many disabled people to be deprived of their freedom.
The Reclaiming Our Futures Alliance (ROFA) only launched the petition at the end of last month, but within about two weeks 100,000 people had added their names.
That petition and other campaigning and lobbying efforts appear to have had some impact, with ministers due to announce some amendments to the mental capacity (amendment) bill today (Thursday), although it is unlikely that they will meet all ROFA’s demands.
ROFA’s petition raises grave concerns about the bill – which is set for its report stage in the House of Lords on Wednesday (21 November) – and the powers it will grant care home managers, local authorities and NHS organisations.
The bill will affect an estimated 300,000 people in England and Wales with impairments including dementia, learning difficulties and brain injuries.
It will introduce a new system, Liberty Protection Safeguards (LPS), to replace the crisis-ridden Deprivation of Liberty Safeguards (DoLS), for service-users who are said to need to be deprived of their liberty as part of their care but are considered to lack the mental capacity to consent to those arrangements.
The bill is based on recommendations by the Law Commission but critics say it is “significantly different” from the commission’s own draft bill and omits most of its most progressive elements.
The petition warns that the bill as it stands “will make it easier to deprive someone of their liberty if they are judged unable to make decisions for themselves” and could mean disabled people being “forced to live in care homes because it’s cheaper and easier for the local council even though it’s not what they want or need”.
ROFA – backed by members including People First (Self Advocacy), Inclusion London, and the consultancy Changing Perspectives – believes the bill will significantly weaken protections.
Decisions on deprivation of liberty are currently taken with the help of an independent assessment that “considers the opinions and wishes of the person and makes sure the care that is provided is what the person needs”, says ROFA.
But the petition says the bill would scrap most of these independent assessments and would often give decision-making power instead to care home managers, “who have an interest in keeping people in their care homes”.
An independent assessor will only be asked to carry out a review if the service-user is believed to be objecting to the deprivation of their liberty, and it will be up to the care home manager to decide if that person is objecting.
Similar powers would be given to managers in local authorities, hospitals or NHS clinical commissioning groups when considering LPS for disabled people in other care settings.
Andrew Lee (pictured), director of policy and campaigns for People First, said he hoped the number of people responding to the petition would raise awareness with the general public and “put pressure on the government and MPs to change and improve the bill”.
Among his key concerns with the bill are the lack of an automatic right to independent advocacy; the conflict of interest created by a care home manager having responsibility for arranging assessments, as it would “give them permission to put their financial gain over someone’s wishes to live independently”; and the lack of a duty to promote liberty.
He also said there was “a lack of a right to accessible information” about the LPS process, which “is vital if a person is going to be a part of what is happening”.
Lee said the bill had been “rushed through and rather than look at any of the main issues with the Mental Capacity Act and get it right, rights and safeguards have been stripped away.
“Real research needs to be done around the definition of deprivation of liberty, when it is applied and what it covers.
“For now, this bill has just made it easier for people to be deprived of their liberty by taking away their rights.”
He said the bill “gives people who already have power, more power over the decisions in a person’s life”, and he warned that if it was passed in its current state it would “send the rights of disabled people back around 40 years”.
He said he feared a worst case scenario with nothing to stop a care home manager “locking up a person for the rest of their lives, just through the simple fact that they are the ones making the decisions about whether a person has any say about where they live, whether a person has an assessment and whether they get an advocate”.
He added: “For me, this law will lead to further institutionalisation of people with learning difficulties and it is unacceptable that in this day in age, after fighting so hard to be treated as equal under the law, that this bill can come along and treat us like objects.”
Simone Aspis, director of Changing Perspectives, said the response to the petition was “fabulous” in such a short period of time.
She said the legislation “starts from the wrong place” and needed to begin instead with “the promotion of people’s liberty” rather than its current starting-point of creating a legal framework to allow care homes and local authorities to deprive someone of their freedom.
A Department of Health and Social Care spokeswoman said the bill would “reform a broken system and reduce the number of vulnerable people waiting for access to essential protections by simplifying the process and making it less burdensome.
“We agree safeguards must be protected. That is why the proposed model has all authorisations decided by a responsible body, and independent oversight from approved mental capacity professionals.
“We are also considering changes to strengthen safeguards, such as the explicit exclusion of care home staff from conducting assessments.”
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