Up to 20,000 disabled people are in danger of being caught up in a bureaucratic wrangle that could not only deny them the opportunity to live more independently but which could also be costing local authorities millions of pounds in unnecessary residential care.
The problem has been highlighted in a report – No Place Like Home – published last week by the Voluntary Organisations Disability Group (VODG), an umbrella group for 30 disability organisations.
The report claims that battles over funding responsibilities between councils and primary care trusts are blocking the transfer of disabled people from residential care into more independent accommodation.
This, says the VODG, not only contravenes their basic human rights and flies in the face of recent government policy, it is also preventing many disabled people from moving into cheaper forms of care.
The problems arise when the disabled person has been placed by one local authority in a residential care facility located in another part of the country. These out-of-area placements affect 20,000 people and are funded by the original placing authority.
Similarly, where a PCT arranges a continuing care placement in a care home or independent hospital in the area of another PCT, the placing PCT remains responsible for the NHS contribution to the care.
However, if the individual then decides to leave the residential facility and move into independent accommodation, his or her “place of ordinary residence” is deemed to have changed, and the new local authority becomes legally responsible for assessing and supplying their need for support.
At least, that is what is supposed to happen. In reality, legal disputes over the definition of “ordinary residence” have resulted in an unseemly tug of war, with disabled, often vulnerable, people caught in the middle.
“Often what happens is that there will be a dispute over who pays for the assessment that is needed before the person is able to move,” says the report’s author Roger Blunden. “Without the assessment they can’t move, but often they can’t get the assessment until they have moved out of residential care. It really is a form of discrimination.”
The VODG estimates that local authorities spend about £3m a year on administrative and legal fees dealing with ordinary residence disputes. And, while the local authorities instruct their lawyers, hundreds, possibly thousands of disabled people are left in limbo.
“It’s difficult to be precise about numbers, because there aren’t any official records,” says Blunden. “We estimate that at any one time there are about 500 people caught up in ‘ordinary residence’ disputes. But with 20,000 people in out-of-area placements there are potentially thousands more who could be affected.”
There is also a lack of consistency across the country in how these situations are handled. In some areas the host authorities willingly accept responsibility for a person’s care when they move out of residential care. In others it is the placing authority that agrees to continue funding a person’s care, even though they are no longer in residential care. And in some parts of the country there are local agreements between authorities around ordinary residence.
Unfortunately these agreements are not legally binding and may be challenged at any time if an authority decides it does not wish to abide by them.
“It’s a crazy situation,” says Graham Faulkner, vice chair of the National Epilepsy Association. “People are getting trapped in residential care by bureaucratic obstacles that mean their care is actually costing more than if they were allowed to move into more independent accommodation.
“It is denying disabled people their basic human right to be able to choose where they live. It also goes against the whole essence of recent government policy towards disabled people which has been to recognise their civil rights and to encourage greater independence.”
Faulkner says he does have some sympathy for local authorities who may suddenly find themselves responsible for the care of scores of people who need quite intensive and expensive levels of support. He gives the example of Buckinghamshire in which the Chalfont centre offers residential care to over 150 people with epilepsy.
“Given the appropriate support, probably around half of those could move out to more independent living. Now that’s 70 to 80 people that Buckinghamshire would have to pay for, which they’d be quite happy to do as long as they’ve got the resources to do it.”
Faulkner suggests that one solution would be to give disabled people their own individual budgets that could then be used to pay for their support once they move out of residential care.
“Alternatively the government could allow the transfer of funds between authorities so common sense could prevail.”
The VODG is urging the Department of Health to help resolve the situation by clarifying the “principle that a person should receive appropriate support from the authority where they are currently living or wish to live, regardless of circumstances”.
Contacted by Community Care, the DH emphasised that where a person is transferring from Part 3 accommodation to other forms of social care, the responsibility for funding that care moves from one local authority to another:
“The Department expects the local authorities involved to make any necessary changes to the funding arrangements in a way which ensures continuity of care and appropriate care for the service user. This is a matter for local authorities to decide, taking their own legal advice when necessary.”
Unfortunately, if such legal advice results in a protracted dispute, the emotional toll on the individuals involved can be considerable. The decision to move into more independent living is seldom taken lightly. To then learn that the move is being blocked can be devastating.
“Some of the people I met who were caught up in these disputes were extremely distressed by it,” says Blunden. “Moving home is a stressful enough thing at the best of times without having to fight for the right to do it.”
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Wasting money on lawyers, infringing human rights
Robert is 63 and for many years has been living in specialist residential care for people with epilepsy. His care is funded out of area by the local authority that found him the placement many years ago.
Recently he has been encouraged to become more independent and hopes to move for assessment into a supported housing scheme before moving on to a local tenancy with specialist support.
In doing so, Robert would legally become an “ordinary resident” in his new area and his old local authority would no longer be responsible for funding his care. However, Robert’s new authority is refusing to fund his assessment thereby blocking his move into independent living.
The cost of Robert’s residential care is £890 per week. His support costs would be £500 per week during assessment, falling to £300 per week in the new supported housing scheme.
There would therefore be a net saving of £590 per week if this dispute could be resolved.
In the meantime, Robert remains trapped in an unsuitable and unnecessarily expensive placement that is no longer relevant to his needs.
This article appeared in the 12 July issue under the headline “Passing the buck”