Sixty Second Interview with Roy Webb
By Maria Ahmed
Roy Webb is the head of policy, National Centre for Independent Living
The government is planning a change in benefit policy to stop Independent Living Fund payments to people while they appeal against decisions to stop or reduce their Disability Living Allowance. It will reimburse any care expenses occurred by the person if the appeal is successful. What are your concerns about this and what consequences do you think it could have?
I think the first point is that this is not a planned change in policy – it is an unforeseen result of legal advice which says that ILF trustees do not in fact have discretion, by the terms of the trust deeds, to continue payments pending the outcome of DLA appeals. As such it is an example of the legalistic and bureaucratic minefields wearily negotiated every day by disabled people in order to get the basic support that we need. The system needs to be reformed so that it focuses far more on outcomes for people who use it.
Our concerns are that this will threaten people’s support arrangements to live independently in their own homes. DLA appeal processes can go on for months. Without ILF funding many people will be unable to retain personal assistants and services without going into large amounts of debt and be forced back to using institutionalised care or even residential care.
Do you think it is likely that local authorities will step in to make up the shortfall in care packages caused by the withdrawal of ILF support in this period?
No, because local authorities are so heavily rationed and resource-led. However we would urge them to do so. We would also urge disabled people in this situation to remind their local authorities that they and not the ILFs have primary statutory responsibility for meeting their assessed needs. Nobody can be forced by a local authority to apply for any benefit, including ILF.
Do you think the ILF plans could work against the government’s drive to put ‘independence’ at the heart of adult social care?
We have received assurances that ILF is working closely with DWP to remedy the situation. I think it would be unfair to say that the ILF is deliberately working against “the government’s drive to put ‘independence’ at the heart of adult social care” but inadvertently this legal position threatens some people’s independence.
Is this an example of government departments not working together enough and running conflicting policies? If so, what needs to be done about this?
We think it is not so much an example of cross-government co-operation as an example of the welfarist system that still treats disabled people as passive recipients of ‘benefits’ and charity. NCIL’s ‘Right to Independent Living’ campaign is calling for legislation that would enshrine the right of all disabled people to the support they need to be equal and active citizens.
Has the government got its definition of independent living right?
The Improving Life Chances of Disabled People report was encouraging in that it adopts the social model of disability as government policy, devotes significant space to independent living and recognises the importance of self-determination by calling for a user-led centre for independent living to be set up in every locality. We found the adult social care green paper less positive because it infers an expectation on disabled people to accept informal care from friends and family – that is not independent living. NCIL is keen to assist government to develop its definition of independent living so that it moves closer to the philosophy of independent living developed by the Disabled People’s Movement.
What does the government need to do to ensure its vision of independent living can be realised?
It needs to honour its commitment to work closely with organisations controlled by disabled people. In particular it needs to build capacity in existing Centres for Independent Living and invest in the development of new ones. The planned extension of Direct Payments and Individual Budgets simply will not succeed without securing that infrastructure.