The government is facing calls to halt the progress of its mental capacity bill through parliament because of its “shocking” failure to consult any disabled people’s organisations about the controversial legislation, in a clear breach of the UN disability convention.
The Department of Health and Social Care (DHSC) has admitted in a freedom of information response that it failed to consult any organisations led by disabled people while drawing up its mental capacity (amendment) bill.
Instead, it resorted to discussions with big charities like Mencap and Sense, which are run and controlled by non-disabled people, a clear breach of the UN Convention on the Rights of Persons with Disabilities (UNCRPD).
It released the list of organisations it consulted in a freedom of information response to the disabled people’s organisation (DPO) Inclusion London.
But DHSC this week admitted that it believed – wrongly – that consulting non-user-led charities like Mencap and Sense on disability-related legislation meant that it was complying with the convention.
Inclusion London said it was “extremely disappointed but unfortunately not surprised” by the department’s “continued apparent inability to understand the difference” between disability charities and DPOs.
And it said it was “outraged” by the failure to consult any DPOs about the bill “despite repeated requests from organisations of people with learning difficulties and self-advocacy groups”, while Inclusion London said the government had also failed to publish any accessible, easy read information about the bill.
Inclusion London called on the government to halt the passage of the “hugely important bill” until it had carried out a “meaningful consultation” with DPOs.
And it called on the government to take its duties under the convention seriously and start engaging directly with DPOs “as required by the UNCRPD”.
Tracey Lazard, chief executive of Inclusion London, said the government appeared to be “deliberately and persistently misunderstanding the very real difference” between DPOs and those charities “that are run and controlled by non-disabled people that do not represent us or reflect our lived experience”.
She said the evidence pointed to the government “deliberately choosing not to consult or engage” with DPOs, and she added: “This is quite simply unacceptable and goes against everything the UNCRPD stands for.”
She said: “In any other circumstances there would be an outcry if a bill that focuses on a specific community then excludes that community from having any information, knowledge or say over that bill.”
But she said this now appeared to be “standard government practice” where disabled people were concerned.
Last week, DNS reported how more than 100,000 people had signed a petition – drawn up by a network of DPOs, including Inclusion London – demanding the government make major changes to the bill because of fears that it would make it easier for many disabled people to be deprived of their freedom.
There are particular concerns about the powers that the bill – which will affect an estimated 300,000 people in England and Wales with impairments including dementia, learning difficulties and brain injuries – will grant care home managers, local authorities and NHS organisations.
Some amendments to the bill have been made in the last few days, but they have not satisfied the concerns of disabled campaigners. The bill began its report stage in the Lords yesterday (Wednesday).
The timing of DHSC’s admission is particularly embarrassing for the government, coming just days after a UN rapporteur delivered a stinging report on its efforts to address the extreme poverty experienced by disabled people and other disadvantaged groups.
It is also little more than a year after the chair of a UN committee said the government’s cuts to social security and other support for disabled people had caused “a human catastrophe”.
In the freedom of information response, DHSC listed 28 organisations that it consulted with about the bill between March 2017 and July 2018, including the General Medical Council, the Law Society, the National Autistic Society, Mencap, Sense, Rethink, the Care Providers Alliance, Age UK, the British Association of Social Workers and BUPA.
It also said it consulted with representatives of local government, the social care sector and the NHS.
But not one of the 28 organisations is led and controlled by disabled people.
The UNCRPD makes it clear that, when developing laws and policies relating to disabled people, governments “must closely consult with and actively involve persons with disabilities, including children with disabilities, through their representative organizations”.
It defines “representative organizations” as those that are “led, directed and governed by persons with disabilities”, a definition which the committee on the rights of persons with disabilities included in its “general comment number seven”, which was adopted in September.
When Disability News Service (DNS) asked DHSC why it failed to consult any DPOs about the new legislation, and whether it accepted that this was a breach of the UN convention, a spokeswoman said there was no such breach “as we have consulted (and continue to consult) with ‘representative organisations’, as required”.
She added: “The [UNCRPD] requires government to consult with ‘representative organisations’.
“We have complied with this by consulting throughout the process with third sector organisations, such as Mencap and Sense, who represent disabled people and whose members have fed back their views.
“We have also engaged directly with individuals with dementia and learning disabilities, and their carers, to ensure the bill delivers effective reform whilst strengthening safeguards.”
When DNS pointed to the convention and general comment number seven, another DHSC spokeswoman declined to change the comment, and said: “We consider that we have complied with the convention by consulting throughout the process with third sector organisations, such as Mencap and Sense, who represent disabled people and whose members have fed back their views.”
DHSC also says the bill is based on proposals from the Law Commission, which itself carried out four years of engagement with service-users, local government and service-providers.