 |
||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
|
JULY 1998 - Ref 7118 The Government's New Deal aims to encourage disabled people to move into, or stay in, work. Research carried out by Ann Kestenbaum for The Disablement Income Group found that severely disabled people who want to work can face a 'personal assistance trap' as well as the 'benefits trap'.
It is often assumed that disabled people who need a high level of assistance with their personal care and other activities of daily living, are incapable of, and anyway do not want, work. This research draws attention to the circumstances of those who do have job opportunities and want to take advantage of them, revealing facts about a 'personal assistance' trap which operates on top of the 'benefits trap' and other well-documented barriers to work. The policy context Personal assistance users are affected by two strands of social policy pulling in different directions. Rationing resources by targeting them on the poorest disabled people by means-testing their community care can be seen to be in conflict with the Government's New Deal for disabled people and other recent employment initiatives such as antidiscrimination legislation and the Access to Work programme. Attitudes to work Apart from the financial rewards which can normally be expected, paid work provides self-esteem, social contact and a valued opportunity to contribute skills and experience. The status it offers is particularly important for people who have experienced lack of choice and control as clients of social care agencies. Some personal assistance users also want to challenge society's stereotypes, by being seen to be working. Incapacity Benefit, you have to score 15 points. Well, I scored 150 points and I'm working! Paying for personal assistance Sources of funding The cost of personal assistance can be more than £400 a week. Few personal assistance users are able to meet these costs plus their normal living expenses from their earnings. For most of the people in the study, this would have meant salaries above £20,000 a year, an unreal ambition for many, particularly those whose ideal job would be part-time. They therefore rely upon support from social services, the Independent Living Funds (ILFs) and the Access to Work scheme (see Box 1).
Direct payments Many disabled people with personal assistance funded by the local authority prefer to have direct payments in lieu of services in order to ensure the flexibility and control that they require. However, this is not always possible because some authorities do not offer direct payments. ILF funding is a better option in this respect but, since 1993, people have not been able to get ILF support without a prior baseline commitment of £200 pw from social services. Means-testing personal assistance Personal assistance users who are funded by either the ILF Extension Fund or 93 Fund face a means-test requiring that all income above the applicable Income Support level plus a £30 pw earnings disregard, must be contributed towards the cost of care. Half of the care component of the Disability Living Allowance (DLA) must also be paid. If people get all their personal assistance funded by their local authority, they may not have to make such large contributions to the cost, but local authorities are increasingly implementing more stringent charging policies and some operate financial assessments comparable to that of the ILF. It is now unusual for social services to fund a package costing more than £200 pw without insisting on applying to the ILF for the top-up. One personal assistance user, in an authority with a less harsh means-test, calculated that he would be better off not applying for the highest rate of DLA and thus remaining ineligible for the ILF. The reason I insisted on not using the ILF is that with an ILF package you are means-tested. What would have happened if I'd gone the ILF route is that I'd have been working just to pay my assistants ... I've talked to other friends who are personal assistance users and that's one of the major things preventing them from working. (This person's local authority charged a flat rate of £10.50) Separate to the argument made by many disabled people that personal assistance should be provided free as of right, many in the study argued that it was wrong to charge people who are paying Income Tax, National Insurance contributions and Council Tax, for their personal assistance. Variable local authority policies Within the study, one authority had no service charges at all. Another had a flat-rate charge of half the DLA care component for all service-users. A third operated a means-test with a £50 earnings disregard and a fourth had only a £15 earnings disregard. A further authority made no charge for people under 65 who were working. This variability can make it difficult for individuals to change jobs if it involves a move from one local authority to another. One of the people interviewed wanted to move but was constrained by the more punitive charging policies in both his neighbouring authorities. A second had to forego the offer of a job because there was no straightforward facility for transferring his care package from one authority to another. Extra disability-related costs All severely disabled people have extra costs as a direct consequence of their impairments. DLA is the benefit designed to cover these but it is insufficient in many cases. Having a personal assistant itself often generates extra costs, for example for food and fuel. There can be extra disability-related costs associated with working - additional journeys, costs of running vehicles, extra help at lunchbreaks etc. Not all of these are covered by the Access to Work scheme. Disincentives to working for promotion The nature of flat-rate earnings disregards means that there is little incentive to work for promotion to higher paid jobs. I like what I do and obviously I want to progress. But my worst fear is a pay increase. Whereas most of my colleagues are thinking about normal career aspirations, i.e. a new post, more money and so on, for people on the Independent Living Fund, there's actually no incentive at all to progress. Personal assistance at work Sources of funding Assistance at work can be funded in one of three ways: by the employer; through the Employment Service's Access to Work scheme (ATW); or by social services or the ILF as an extension of community care packages. The latter can be the best option because assistants who are available to work either in the home or in the workplace can be organised more easily into mutually convenient shifts. But, in most cases, social services or ILF funding does not cover assistance in the workplace or for getting there. The same assistants can be employed, but funded separately, through ATW, for their hours in the workplace. Sometimes, however, the Employment Service's Personal Assessment and Counselling Team (PACT) insists on use of a particular agency. ATW-funded support workers Practice varies between different PACT offices, making it more or less difficult for disabled people to get the arrangements that would most suit them. The study showed some confusion, and variation across the country, about the extent to which an ATW-funded support worker in the workplace could carry out personal assistance tasks. If this was not included in the support worker's job description, the disabled worker has to arrange for separate assistance, for example with toileting, involving additional personal expense and organisation. Interviewees appreciated much of what they received through Access to Work but had some criticism of the policy and practice of PACT teams. These ranged from 'petty bureaucracy' or long delays, to a lack of understanding of the problems disabled people faced. The scheme was thought to be inadequately publicised. Complexity of arrangements The overall co-ordination of a disabled worker's personal assistance arrangements can be complex, perhaps unnecessarily so. A person may have to negotiate with social services, the ILF, a third-party brokerage agent (where indirect payments are involved) and PACT. Different criteria and rules about financial contributions, and changes in these, impact upon the person's confidence and ability to plan ahead. Sometimes people involve themselves in extra expenditure simply to avoid the hassle of negotiating more funding.
About the study The research was based upon interviews with 42 people who needed high levels of personal assistance and mostly relied upon the ILFs, social services, or both, to fund this. They were in one of the following categories:
How to get further information The full report, Work, rest and pay: The deal for personal assistance users by Ann Kestenbaum with Helena Cava, is published for the Foundation by YPS (ISBN 1 899987 89 4, £13.95 plus £1.50 p&p). Click on the 'order report' icon in the left margin to order online. |
||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
