Care minister Norman Lamb (see above photo) on Friday unveiled a green paper of proposals to give people with learning disabilities, autism and mental health conditions more rights around the care they receive.
No voice unheard, no right ignored is a consultation to gain the views of disabled people, their families, those working in the sector and other interested parties on the proposals. It opens on 6 March, and closes in 12 weeks’ time, on 29 May. Here are six things you need to know about the proposals.
“I think the need for reform and a change to the law is overwhelming,” Lamb told the Guardian. “The system has proved itself unable under the existing framework to give people the rights and entitlements that they, in my view, deserve.”
The paper says that disabled people “should have the same choices, freedoms and dignity as others”, which means “being members of their community, part of a family, having meaningful friendships and a social life, access to paid employment opportunities”.
The proposals include a right for people to be treated near their home and family, rather than in settings hundreds of miles away, and changing the “default” response so that it is harder for people to be admitted to institutions, such as providing assessment and treatment units, when appropriate care in the community is available.
In 2011, a Panorama programme revealed the abuse of patients with learning disabilities by staff at private hospital, Winterbourne View. A concordant of key organisations was set up the following year to deliver change and get people out of institutions, but the deadline of June 2014 was missed. Lamb recognises that, “the system carried on with business as usual”, after the concordant, and this consultation is a “complete response” to that failure to change. “That’s why we need to strengthen people’s rights and in effect transfer power from institutions to individuals,” he said.
“We have to end the horror of families feeling that they aren’t listened to, that their concerns are ignored,” Lamb said in a statement.
The consultation paper references the Justice for LB campaign, set up in the wake of the death of 18-year-old Connor Sparrowhawk, who had learning disabilities and epilepsy and died in the bath at an NHS inpatient unit.
Lamb says of the campaign that he “wanted them [the campaign] centrally involved”. They had drafted a bill – the LB bill – and done a lot of work around the issues, “so it made absolute sense to work with them rather than exclude them”.
This influence is clear. The paper asks for views on whether NHS commissioners and local authorities should take into account the need for links with family and friends when making decisions about treatment and living arrangements. It also states that statutory bodies should “recognise the importance of people being in their own home or community or close to or with their family, if that is their choice”.
A key proposal is to require professionals to justify any decision to ignore a person’s wishes about their care and send them away from their community or family – rather than the onus being on the family to justify why this should not happen. There is also a proposal to make a person’s rights clearer: for professionals to tell a person and their family about their rights when they start talking about the possibly of an admission to hospital, and to give them a personalised summary of their rights relevant to their individual circumstances.
The Mental Health Act
The consultation paper looks at possible changes that could be made to how people with learning disabilities and autism are viewed under the Mental Health Act. Lamb argues that the act is “a bit clumsy as currently drafted, about lumping in people with learning disabilities and people with autism into the definition of mental health … I just wanted to initiate a discussion about how do we make sure that we treat people with learning disabilities appropriately under legislation that ultimately denies people rights in certain circumstances.”
Suggested changes to the act include explicitly excluding learning disability and autism from the act, as they aren’t mental illnesses or disorders. Or, two other options involve more nuanced changes to definitions to allow people to be considered under the act where appropriate.
Under the proposals, a named social worker for a person with learning disabilities or autism would be in charge of ensuring that their plan of care is based on the “least restrictive, least institutional setting” possible, and considering all community-based options. When someone is in an institutional setting like a hospital, the named social worker would be responsible for reviewing care regularly to see if they could be cared for somewhere less restrictive. The social worker would also be in charge of informing the family and making sure they feel involved in decisions about care and support. However, if the individual wanted someone else than a social worker to undertake these roles – such as a professional carer or community nurse – then as long as they had the skills to do so, this should be allowed.
The paper shows the government’s continuing support for personal budgets, with the proposal of extending a legal right to a personal health budget to some people with learning disabilities and autism. These would either be for people in inpatient institutions, to help them move back into the community and live independently if possible. Or the budgets would be given to people with learning disabilities who are subject to the Care Programme Approach and have either mental health needs or display challenging behaviour. The paper states that the two options aren’t mutually exclusive, so presumably both groups could be offered personal budgets if the consultation shows support for the idea.
Will it happen?
By the time the consultation closes, the general election will have taken place and there may well be a new government and care minister. Lamb recognises this, saying: “It’s frustrating that it comes at this point because I would love to be able to see this through and get it into legislation.”
However, as a green paper it has secured support across government from both the Lib Dems and the Conservatives. “I hope that we can build a strong consensus around these changes,” he says. “I struggle to believe that anyone will ultimately oppose them.”
However, there is no guarantee that the changes proposed could happen quickly, or at all, even if the next government agrees with the green paper. Jan Tregelles, chief executive at Mencap, said: “While this consultation is important, where changes in the law are needed to deliver new rights, this could take years and is not guaranteed.”
In response, Lamb said: “Well nothing’s guaranteed in life. It requires people elected in May and in government in May who have a passion and commitment to see this through. There’s no reason why it does need to take years. We’ve come up with the proposals, we’re consulting on them in this period, and if the new government has the will to do it, it could be an early priority.”
Responses from the sector
Councillor Katie Hall, Local Government Association lead member for learning disabilities: “It is not acceptable that anyone with a mental health need, learning disability or autism feels they do not have the same rights as everyone else. Local government fully supports this consultation. It is a real opportunity for government to make rapid changes that will empower individuals and their loved ones to become more involved in care decisions and allow more people to live independently if they can safely do so.”
Mark Lever, chief executive of the National Autistic Society: “We urge people with autism and their families to respond to the consultation and the government to listen to what they have to say. Whoever forms the next government must carefully consider people’s views and act quickly if it’s to end unnecessary and potentially damaging hospitalisation and help people with autism to live the life they choose.”
Statement from Justice for LB campaign: “This is a societal issue, a human rights issue. We all need to step up and challenge the status quo. We each need to raise this issue with election candidates over the coming weeks.
“Over the last 12 months, a formidable network of #JusticeforLB volunteers have come together to seek answers and to make changes. What the government proposes goes some way towards the changes required, we’re not sure that it’s far enough, but we’re glad that these conversations have started and we will do all we can to contribute.”
Prof Sir Simon Wessely, president, Royal College of Psychiatrists: “Given the scale of the task in improving services for people with learning disabilities and autism, there are still a number of obstacles that need to be overcome, including inadequate funding sources, deficient information systems, poor organisational structures and work practices, and ineffective local commissioning arrangements.”
Jan Tregelles, chief executive of Mencap: “We must remember that on their own, laws are only part of the solution, of making change happen. To ensure that the thousands of people with a learning disability and behaviour that challenges who remain trapped in the system of outdated institutional care like Winterbourne View can return to their communities we must see – alongside the green paper – the development of local support and services and delivery of the closure programme promised by Simon Stevens when he gave evidence to the public accounts select committee.”
Jon Minall, Brandon Trust director of operations: “The reason we’re in this situation is because, historically, NHS England has moved people with learning disabilities from their home cities into units hundreds of miles away and this has degraded the infrastructure in the very areas where support is going to be needed in the near future.
“Closing these units will see many hundreds of people returning to live near their families, so funding must be put in place urgently to avoid huge delays, or worse, many people with learning disabilities reaching crisis point in a community setting that is not set up to support them effectively.”
Please read the full article at The Guardian.