People with learning disabilities should expect to be supported to live independently in their community and exercise control over the support they receive by 2020, according to the government in its response to the recent Green Paper consultation ‘No voice unheard, no right ignored’.

However, the government’s proposals do not go far enough and do not have deadlines or targets to ensure the proposed changes become reality, according to leading learning disability charities.

The government’s response to ‘No voice unheard, no right ignored’ noted stark variability in current commissioning approaches and in resulting outcomes across the country. “This reflected the fact that some commissioners have failed to grasp and act on the urgency of putting in place suitable community provision. Too many have not changed their behaviour, in part because the system is not set up to make it easy for them to do so or to make it hard for them not to do so.”

In response, the key aims outlined by the government are that by 2020 people with learning disabilities should:

Expect to be supported to live independently as part of a community and in a home they have chosen

Know their views will be listened to and be able to challenge decisions about them and about their care

Have clearly stipulated rights within the Mental Health Act

Be able to exercise control over the support they receive with a personal budget, and expect that different health and local services will organise themselves around their needs

Know that professionals are looking out for their physical as well as mental health needs.

The government’s plans are in three implementation phases: the first builds on existing powers and work already underway; the second involves further changes, including proposed legislative changes that cannot be achieved via existing powers; and the final phase looks at more radical solutions to longer-term problems. These include:

Guidance for commissioners of health and social care services on: promoting wellbeing, and factors to take into account when considering living arrangements, including how to support people to live independently, in the community and respecting their wishes and desires

Pilot access to a named social worker who will provide professional advice and support, be the primary point of contact for the service user and their family/carers wherever the person is being supported, and provide a professional voice across the system

Amend Mental Health Act regulations to change the information required on admission so that Approved Mental Health Professionals have to consider and record whether assessment and treatment could be provided without detention in hospital

Consider how Care and Treatment Review principles/processes can be extended to local authority-led and other placements and be strengthened, including if necessary by statutory force

subject to further consultation, make changes to the Mental Health Act 1983: enabling patients and families to challenge whether their wishes and feelings were appropriately considered when making applications for detention

Further consideration in principle of whether and how the Mental Health Act should apply to people with learning disabilities and/or autism and if this remains appropriate.

In the ministerial foreword, care services minister Alastair Burt said: “With both our early and longer-term proposals we are working to ensure that people have high quality care and support in a range of community settings so that they can live in a home of their choice with the care and support they need. For those who need care in hospital we want to ensure that they also receive high quality care.

“To do this, we need to be much better at making sure people with learning disabilities are properly assessed and that any physical or mental health conditions they have are identified and properly treated. This means more of a focus on integrated and personalised care and support, for people with a learning disability and also for those with autism.

“Our aim is that people lead as fulfilling and independent lives as they can, and that they have the support to live independently when possible. This requires a step change. Services, and wider society, should first and foremost see the person and their potential. This means a profound shift from focusing on what people can’t do – to enabling and supporting what they can. For some people, being in employment will be a key indicator of success.”

Not far enough

But learning disability charities Mencap and The Challenging Behaviour Foundation believe the government’s proposals do not go far enough to create the right legislative framework to drive the change that is needed.

Jan Tregelles, chief executive of Mencap, and Viv Cooper, chief executive of the Challenging Behaviour Foundation, said: “In response to the Green Paper proposals, families have already told the government about the devastating consequences of the serious power imbalance in the system – an imbalance which often results in the voices of people with a learning disability being ignored. Today’s response from the government to the consultation does not go far enough to address this and will deeply alarm and disappoint many families.

“Serious legal issues, such as people with a learning disability and behaviour that challenges being sectioned when they do not have a mental illness, have been kicked into the long grass with no timeframe set out to consult on this.  Another key part of the proposals – giving people with a learning disability and their families the right to challenge inpatient admissions – has no timescale set out for the legal changes required. This is crucial in driving the bottom up change that is needed to ensure that the closure programme of inpatient units announced at the end of October by NHS England, the Local Government Association, and the Association of Directors of Adult Social Services is successfully delivered.

“We have seen two long-awaited announcements over the last couple of weeks. Both are aimed at ensuring that the thousands of people with a learning disability and behaviour that challenges who remain trapped in the system of out-dated care institutions, like Winterbourne View can return to their communities. The Department of Health have today set no targets or deadlines to create the right legislative framework to drive the change that is so desperately needed.”

Meanwhile, the Voluntary Organisations Disability Group (VODG) warned that more funding is needed if the aims are to be realised.

Dr Rhidian Hughes, VODG chief executive, said: “We broadly welcome Government’s response. However, let us be clear that the plans and ambitions set out by Government for people with learning disabilities, autism and mental health needs require proper funding. 

“Since 2010 £4.6 billion has been taken out of social care. Ahead of the spending review, we urge government to ensure that social care is protected including making provision for the gap in social care funding.”

But Mark Lever, chief executive of the National Autistic Society, said the response was “disappointing” and betrayed “a lack of leadership from Government. 

"In the wake of the abuse uncovered at Winterbourne View, the Government committed to remove autistic people from inappropriate inpatient placements and into community-based services. But, despite a series of action plans from Government over the past four years, families and individuals have seen very little change. 

"In March, the Government consulted on new and very welcome proposals to introduce additional legal rights for families and individuals to challenge decisions on their support. But today, the Government have said that they aren't going to take them forward – only keep them under review. This is unacceptable and doesn’t give individuals with autism and their families the assurances that things will improve.

"Just last week, NHS England showed how seriously it's taking this issue, putting forward some promising changes alongside £45 million funding. It's time the Government follows suit and takes the necessary action to strengthen the rights of people with autism and/or learning disabilities, and their families."

 

The government's response to the Green Paper will be discussed in depth at the forthcoming Learning Disability Today London conference on November 26. For more information, click here