Some of the few disabled people’s organisations (DPOs) that the government claims took part in the “engagement” process that led up to its social care white paper have suggested that their views and concerns have been ignored.
The Department of Health and Social Care (DHSC) listed more than 200 organisations that helped “shape” People at the Heart of Care, when it was published last week.
DHSC says it has worked with representatives from organisations such as local authorities, charities, trade unions, lived experience representative groups and those with “lived experience” of “drawing on care and support”.
But the list appears to include fewer than 10 DPOs, possibly as few as seven.
Of those DPOs that Disability News Service has been able to hear from this week, all of them raised concerns that ministers had failed to listen to what they were told.
Disability North (DN) said it was surprised to have been listed as taking part in the process, as its engagement had been so “light touch”.
Dr Victoria Armstrong, DN’s chief executive, said it had felt as though the government’s agenda had “already been set”.
She said the funding crisis was the white paper’s “elephant in the room”, and there was little point providing support to people to make decisions on their social care if the system continued to be underfunded.
She said: “I certainly welcome the mention of direct payments [in the white paper], but again, social care should be about putting disabled people at the heart of these discussions and DPOs ought to be funded properly to be able to offer that independent advice.
“Our experience to date is that engagement has been about commenting on an already developed agenda, and it is an agenda that hasn’t been co-produced and ignores the need of a much larger funding injection so that the social care system is fit for purpose.”
Another of the DPOs listed by the government is Greater Manchester Coalition of Disabled People (GMCDP).
Its executive council issued a statement distancing itself from the white paper, and expressing support instead for the National Independent Living and Support Service (NILSS) proposals devised by the disabled people’s movement.
GMCDP’s executive council said: “Looking at the white paper it does not appear the government listened to anything they were told and have produced policy proposals that fail to address the crisis in social care or support independent living.
“GMCDP does not endorse the white paper, nor does it reflect any of the issues and recommendations raised by GMCDP.”
Disability Rights UK (DR UK), another DPO listed by the government, also said that ministers had ignored its recommendations.
It attended some consultation meetings, but it had no one-to-one meetings with the government, although it passed on its thoughts in letters.
Fazilet Hadi, DR UK’s head of policy, said: “We did ask [health and social care secretary] Sajid Javid and then [care minister] Gillian Keegan to put disabled people at the heart of engagement and to meet with DPOs, but this wasn’t acted on.”
She said the vision, strategy and initiatives contained within the white paper were “wholly inadequate”.
She said: “There is no recognition of the need for parity between health care and social care, there is lack of focus on supporting disabled people to live life rather than just exist, no commitment to stop care charges for working-age disabled people and no recognition of the £8 billion per year needed in additional funding.
“The white paper does nothing to tackle the waiting list for care, the millions of people turned away, the care staffing crisis or the inadequate levels of care and support currently being provided.”
Barbara Booton, project manager of the south Yorkshire-based advocacy, information and advice DPO Active Independence, who attended a DHSC round-table event, said: “The key issue of funding was raised by me and others several times, yet there is nothing in the proposals to reflect our concerns were listened to.”
She said that several of the issues she raised, such as the need for care to be person-centred and some of the issues around information and advice, were included in the white paper.
But she added: “The [white] paper said the right words, but I have little faith or evidence that it will be implemented.
“Many disabled people need support throughout their lives yet have to hand over large chunks of benefits they recover for other purposes to pay for essential care. They can never build up savings as non-disabled people can.
“It is deeply unfair and discriminatory and consigns disabled people to a life of restricted income and opportunity.”
The white paper is more than 100 pages long, but says nothing new about how the government plans to ensure adult social care in England is properly funded over the next decade.
Sajid Javid, the health and social care secretary, said last week that the government’s “ten-year vision” for social care “clearly lays out how we will make the system fairer and better to serve everyone, from the millions of people receiving care to those who are providing it”.
In an opinion piece published by the Daily Telegraph on Thursday (2 December), care minister Gillian Keegan said the white paper was “about getting the right balance between personal and public contributions with a charging system which is necessary, fair and responsible”.
She wrote: “We are reforming the system to ensure everyone has the choice, control and support to live independent lives.
“To ensure everyone can access outstanding and personalised care and support.
“And finally to ensure adult social care is fair and accessible to all who need it.”
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