25 February 2009
Action for M.E. has written to every member of the Welfare Reform Bill Committee, asking them to ensure that the new legislation includes adequate safeguards for people with long-term fluctuating conditions like M.E.
The move is part of Action for M.E.'s on-going campaign to make MPs aware changes intended to benefit the majority of unemployed people could make life much worse for people with such conditions, unless their illness is properly understood by advisers and decision makers.
The latest letter from CEO Sir Peter Spencer, sent 19 February, said:
'We support the Government's aim to support more people, including disabled people, back into work. People with M.E. want to work but many simply cannot.
The way in which the Bill is implemented will depend on accurate assessment procedures, extremely well informed, supportive personal advisers, adequate resourcing and regulations which have yet to be tested by the scrutiny of people on the ground.
Based on the evidence of 1162 people with M.E. and carers, I would ask you to bear in mind the following questions as you scrutinise the Bill:
1. What will payment by results mean to those furthest from the labour market?
2. Will legislation and regulations ensure adequate and appropriate training for personal advisers?
- Will there be enough trained personal advisers?
- Will awarding larger and fewer contracts to non-specialist providers, in Mencap's words,
'squeeze expert, niche providers out of the tendering process'?
3. What safeguards will there be to ensure activity required by personal advisers does not compromise a claimant's health?
- What will happen to genuine claimants who cannot carry out the kind of work related
activity proposed in the Bill, will they suffer financially?
- What happens if they are subjected to an activity regime which is too rigorous for their
4. What safeguards will there be to ensure that claimants are not, in reality, pressurised to undertake therapies or condition management programmes such as cognitive behavioural therapy of graded exercise therapy which are controversial and which patients have the right to refuse in the NHS?
5. How will Government legislate or regulate to prevent misuse of sanctions? What happens to a genuine claimant who is sanctioned and goes off benefit?
6. Is resort to an appeal satisfactory as a safeguard, based on past experience?
7. Will JobCentre Plus and other support providers be located in offices accessible and suitable for people with physical disabilities or cognitive problems? Will new forms and information leaflets be available in simple, easy-to-read formats to promote understanding and prevent error?
8. Who will provide support to claimants in administering individual budgets?
9. Given the barriers disabled people face, can the Government offer more in the way of 'conditional carrots' ? For example:
(i) people with fluctuating conditions need a very gradual return to work, flexible hours
and opportunities to work from home as and when their health requires
(ii) are initiatives like the Disability Discrimination Act and increased budget for Access
to Work enough to make employers retain, employ and value people with disabilities
and long-term fluctuating health conditions, physical or mental?
(iii) can Government ensure that no-one will be forced further into poverty by undertaking
work limited by the constraints of their health?
As I am sure you will agree, when it comes to people who have chronic conditions, physical or mental, the Bill must not prioritise employment at any cost, or training for training's sake, at the risk of undermining health.'
Sir Peter has already written to MPs, MSPs and key members of the Lords enclosing copies of Action for M.E.'s consultation report. A letter was also sent before the second reading of the Bill, highlighting key issues.
The Committee's consideration of the Bill is expected be completed on or before 3 March 2009.