Twelve months after the launch of Valuing People Now, Vern Pitt reports on the strategy’s progress in improving the care and life chances of people with learning disabilities
The NHS has long received Department of Health money – some £1.7bn a year to fund care for people with learning disabilities. But the government’s Valuing People Now strategy – one year old this week – proposed that the funding and associated commissioning responsibilities be transferred from primary care trusts to councils, through local deals in 2009-10 and 2010-11, with councils receiving the money directly from the DH from 2011-12.
The rationale was twofold: to give full control of social care resources for learning disabled people to councils; and to clarify that the NHS’s job is to meet the group’s health needs, not offer long-term support.
“It should have been done a long time ago,” says Steve Shrubb, director of the NHS Confederation’s mental health network, whose member trusts provide care for the client group. “When people go into the health care system they shouldn’t stay in it for years.”
Though it is effective from April 2009, agencies were given until March 2010 to complete the transfer for 2009-10.
As of January agreement had been reached in nearly 60 of the 152 areas, but all but five had submitted provisional figures for 2009-10, says the DH. It expects most areas to file full figures for 2009-10 and 2010-11 by the end of March.
But Peter Murphy, co-chair of the Association of Directors of Adult Social Services’ learning disabilities network, says the provisional submissions mask disputes between PCTs and councils, resulting in “heavy caveats” in the submitted figures.
One area of disagreement, he says, is continuing health care – the system under which people who require long-term care due to a health condition have their costs met by PCTs.
DH guidance states that continuing health care funding for learning disabled people should not be transferred to councils.
However, Murphy claims that some PCTs want to retain a portion of their current social care funding to cover the risk that service users will become eligible for continuing health care in future.
“Where we disagree and will probably continue to disagree is that [we feel] there is no relationship between the process of assessment for continuing health care and the transfer of care funding,” he says. “They see an enormous risk to them of local authorities coming back to them for continuing health care cases and getting more funding.”
Even in areas where these disputes are resolved, both sides have had to unpick large PCT block contracts with providers to separate out the health and social care elements. Local Government Association group lead for adult social care Andrew Cozens says matters have been more complex where there are multiple PCTs in a local authority area.
However, Shrubb believes the process will benefit the NHS and local government in the long run by minimising confusion over responsibility for services. He says: “Now, in the main, we’re saying you get your short-term health care from the NHS and any long-term social care from other organisations.”
Shrubb warns against “black and white” policies because of cases where individuals’ health and social care needs are so inter-related that attributing funding responsibility to one side or the other would be wrong.
But he adds: “[The transfer] should make discussions about those small grey areas easier and more focused.”
Some providers and user groups have been worried that, because the transferred money is not ring-fenced, some of it could be ploughed into other council services.
However, Cozens warns against ring-fencing. “This is an area where councils have put in their own resources over and above those from government.”
There is also concern among councils about whether the money they receive will be trimmed when it starts coming directly from the DH in 2011, when big public spending cuts are due to kick in.
The DH is yet to set a formula for distributing these resources. Murphy says a needs-based one founded on indicators such as poverty levels could be catastrophic for some authorities.
His own council, South Gloucestershire, has a disproportionate number of people with learning disabilities, who have come from five long-stay hospitals, making such calculations unrepresentative, he says.
Disputes between central and local government about formulae will have to wait. For now getting a robust agreement before the end of March will be a priority for the many areas yet to hammer out a firm deal.
Housing aims ‘a way off’
Valuing People Now set out to create more choice in housing for people with learning disabilities, and move people into supported housing, rather than residential care.
One means of doing this is investment in assistive technology, which James Churchill, head of provider body the Association of Real Change, says has grown substantially in the past year. He says ARC’s members, including residential providers and those providing support to people at home, “have adopted [assistive technology] out of necessity partly because doing something in this area is one way of getting more out of less”.
The DH’s biggest housing programme for the client group is to move the remaining residents of NHS campuses into accommodation in the community by the end of 2010, which is intended to boost their independence and quality of life. In April 2009, there were about 1,000 people left in campuses.
Mencap’s head of campaigns and policy, David Congdon, says progress on housing choice is a way off while 60% of people with learning disabilities are living with their parents. “Understandably what social services have treated as a priority is moving people out of expensive residential care into supported living rather than tackling those living with their parents,” he says.
Work strategy ‘must address benefits trap’
Six months after the publication of Valuing People Now the government produced its employment strategy for people with learning disabilities.
Valuing Employment Now set out the government’s aim to close the gap between the overall employment rate for disabled people – an estimated 48% – and that for learning disabled people. NHS Information figures published last August found that just 7.5% of learning disabled people known to councils were in paid work in 2008-9.
The employment strategy said raising this rate would involve increasing expectations of what learning disabled people could do, making paid work the default option; improving work experience, training and mentoring; having the public sector lead by example in employing people; and removing barriers to work including transport and the placement of people in residential care.
In October 2009, the DH announced 14 new sites for its Project Search scheme, under which learning disabled people are given internships, including training, potentially leading to a job with the host employer or another organisation. The sites do not open until September this year but the DH reports there are several people already in employment as a result of its pilot at Norfolk and Norwich University Hospital.
Meanwhile the Improvement and Development Agency launched its Real Roles website in October 2009 to provide a forum for councils and people with learning disabilities to share experiences and best practice of creating and gaining employment in local government.
But James Churchill, chief executive of learning disability provider umbrella body the Association for Real Change, warns that action to tackle unemployment must also address the benefits trap.
“That has been a long-term structural weakness which no government has tackled,” he says. “The practical difficulties of getting people a job where they are not worse off for having to work are quite considerable.”
The government is continuing to review the system to ensure there are incentives for learning disabled people but its position is that work does pay and it is due to run a communications campaign to “dispel myths” about the benefits system.
Response from health care ‘patchy’
The health of people with learning disabilities is worse than that of the general population. Valuing People Now blamed poor access to health care. In the strategy, the government accepted – or accepted the aims of – all of the recommendations of Jonathan Michael’s independent inquiry into access to care, published in 2008.
On the back of the Michael report, the government directed PCTs to commission GPs to carry out annual health checks for learning disabled people.
Initially due to run from 2009-10, it was extended recently until March 2011. However, it works on the basis of GPs receiving an incentive payment to carry out the checks rather than being mandated to do so.
Mencap head of campaigns and policy David Congdon says implementation has been patchy. “We want PCTs to put more pressure on GPs to do them so that all people with a learning disability actually get them,” he says.
Congdon is also critical of the “sluggish” implementation of health action plans, setting out learning disabled people’s health needs.
Under the original 2001 Valuing People white paper, these should have been implemented for all learning disabled people by June 2005.
The DH published updated guidance for the NHS on how to implement the action plans last March in order to facilitate progress. But Congdon believes more impetus is needed.
The DH is now tendering for organisations to carry out a confidential inquiry into avoidable deaths in hospital of people with learning disabilities and establish a public health observatory to provide a single point of contact for information on the health of learning disabled people.
Surrey leads way with huge shift of funding
The biggest transfer of learning disability funding from PCTs to councils is taking place in Surrey. It was one of the first areas to examine how the transfer from the county’s PCT to the council – later costed at £60m a year – could be managed.
“Because it was so big we thought we were behind,” says the council’s assistant director of personal care and support, Dave Sargeant. “We were doing a lot of work with other authorities to find out how other people cracked problems but we found out we were ahead of the game.”
First up was to establish how much learning disability services commissioned by the PCT cost. Sargeant and PCT director of finance Michael Munt established that annual spending was £85m but separating this into health and social care elements was more difficult.
The PCT operated broad contracts with providers that met various needs, says Munt. “It boiled down to taking a service and looking at the clients that used it and identifying whether they had a social or health care need.”
Sa rgeant adds: “To understand what was in these contracts you had to know these contracts developed on a historical basis. For example you’d have these big figures, say £Xm was spent on day care, but then someone would say, ‘oh no we don’t really spend £Xm on day care because some of it is now spent on respite care’.”
Eventually both parties agreed a transfer of £58m this financial year and £60m in 2010-11.
The process has involved give and take on both sides but both believe it has strengthened the relationship between health and social care in the county. Munt says: “We were clear what we wanted out of it and we were pragmatic.”
The results of greater co-operation can be seen by services and their users already in some areas, says Sally Dubery, director of the Central Surrey Centre for Voluntary Services.
She says this has helped the parallel process of moving learning disabled people out of the remaining long-stay NHS campuses into council-commissioned accommodation in the community.
Dubery says the openness of the council and PCT has helped allay the fears of service users about the changes, and that the county’s learning disability partnership board has played a vital role in enabling questions to be asked.
The only concern remaining is the cold funding climate which may see the £60m budget slashed when the council starts receiving the transferred funding directly from the Department of Health from 2011-12.
However, Sargeant is confident the meticulous mapping of services will pay off in that situation. “If the government says in two years’ time we can only have less money we have an evidence base to show them to say, ‘that isn’t right’.
This article is published in the 21 January edition of Community Care under the headline “Funds transfer in the balance”