A government pilot project intended to empower disabled people and give them more control over their support has instead caused anxiety and fear among many of those taking part.
Right to Control (RtC) is being piloted in seven “trailblazer” areas across England, including the east London borough of Newham.
The scheme puts support from six sources – including the Independent Living Fund Access to Work and social care support provided by the local council – into single pots of money for disabled people to use as they wish.
But disabled people believe that Newham council is using the RtC pilot as a cover for implementing cuts to their support packages.
They say they are being told by the council to use their disability living allowance (DLA) – which is not one of the six RtC funding sources – to pay for support previously funded by the council.
One disabled woman from Newham, Deborah*, said the pilot scheme was causing fear and confusion among disabled people in the borough.
She said: “It is very difficult to get hold of information and it is very confusing.
“Some people have had their care packages completely changed as a result of RtC. And what they are finding is that they are potentially losing their DLA to the local authority.”
She said there was a “tremendous” amount of anxiety and “despair” about RtC, with one disabled woman expressing “desperate thoughts” about the pilot scheme.
Deborah added: “They are facing a future that is so uncertain. They are terrified of being put into institutions and losing their day-to-day independence. For them there is no future if they cannot go to work, get out and about and meet other people.”
Rebecca*, another disabled woman from Newham, says she has spoken to about 10 disabled people in the borough who had been using direct payments to fund their support, but now say they have seen a drop in their care packages because of RtC and have been told to use their DLA instead.
She said: “I have had ladies bursting out crying, saying they can’t manage.”
One disabled person she knows has been told that her daily support will be cut from one-and-a-half hours a day to one hour, while she will only be funded to use a day centre on three days a week instead of four.
She uses her DLA to pay for weekend support but has now been told by the council to use it to fund the fourth day centre weekday session instead.
Another disabled person has told Rebecca that – because the council has cut support for Taxicard-users – he will now have to use his DLA to cover more of his transport costs, and so will not be able to afford to travel to see his out-of-borough daughter.
Rebecca herself is due to join the RtC scheme and is “very worried” about what impact it will have on her own support.
She said: “People are going to be prisoners in their own homes. That is the thing that worries me the most.
“Right to Control was supposed to empower disabled people and give us personalisation so we could be more independent, but actually it has been a cost-cutting exercise by the council.”
A Newham council spokesman said that more than 400 disabled adults had so far completed support plans as part of the RtC pilot.
He said the council would continue to monitor its “achievements” by “responding to feedback” through groups of service-users and carers, RtC “stakeholders” groups, and other RtC trailblazer areas.
He added: “Care packages and charges towards community care services are dependent on each individual’s circumstances, and does not affect a service user’s eligibility to any of the six funding streams that they may have the Right to Control over.”
But when asked whether this meant there would be no increases in charges or reductions in care packages as a result of RtC, and that disabled people would not be asked to use their DLA – which is not one of the six funding streams – to subsidise council care costs, he declined to comment further.
*Not their real names
14 September 2011