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The Trade Union Disability Alliance (TUDA) brings together disabled trade unionists with affiliated branches and trade unions from across the trade union movement to move forward on issues affecting all disabled trade unionists.

TUDA supports the responses from the British Council of Disabled People (BCODP), Regard and the National Centre for Independent Living (NCIL). We wish to address our response specifically to the relationship between social care provision and employment opportunities for disabled people.

Social Care and Employment

We are aware that the following social care issues affect disabled people’s access to employment, particularly as most disabled workers are low-waged and therefore cannot meet the costs of social care themselves. We ask that the Government take these issues into account when finalising its new policy and vision on social care.

We do not support a two-tier system where people of working age receive a higher level of service provision than older people. However, it will be impossible for the Government’s employment strategy for disabled people, set out in Improving the Life Chances for Disabled People, to succeed if service provision is not first increased.

• There is a lack of recognition by local authorities that disabled people requiring social care are able to work. Working provides disabled people with pride, dignity and self-respect, as well as improving their material circumstances.
• There is a lack of recognition by local authorities that adequate and appropriate social care is essential in order for many disabled people to retain/obtain employment.
• There is a lack of recognition by local authorities that disabled workers have higher social care needs than if they were unemployed. i.e. that once disabled people’s time and energy is used up by employment, they are less able to carry out domestic and personal care tasks for themselves, particularly as it will often take far longer for them to carry out these tasks than it would for non-disabled people.
• The introduction of Fair Access to Care Services (FACS) has already resulted in widespread cuts to social care provision, and this has severely affected disabled people’s ability to work. For example, in the London borough of Newham, widely regarded as a ‘good’ authority, even disabled people judged as having relatively low social care needs received some services in recognition of this in the past. This had a major impact on disabled people’s ability to work. Under FACS, though, disabled people have been divided into four groups, and those judged to be in so-called ‘moderate’ or ‘low’ need groups have had their services withdrawn completely, greatly affecting their employment opportunities. Again, we would like to stress that disabled people can only retain/obtain employment if their social care needs are first met in full.
• Local authorities still have a poor understanding of the concept of Independent Living, and many mistake it for the ‘normalisation’ policies of the 1980s. This is being used as an excuse to provide inadequate levels of social care and to withdraw services. To give a simple example, using an Independent Living model, a disabled person who has serious difficulty in carrying out a task such as cooking, and who therefore takes much longer and expends much more energy on the task than a non-disabled person, will instead use a personal assistant to prepare a meal under their direction. This makes the task no more difficult than it would be for a non-disabled person, and leaves them the time and energy to participate in employment. In a Normalisation model, though, the disabled person will be left to do the task unaided, however much difficulty it causes them, and so will not be in a position to work as well. Disabled people who previously received help with cooking in these circumstances are now having it withdrawn under the pretext that this is supporting independent living, severely affecting their ability to work.
  
• Overall local authorities regard social services departments as gatekeepers for social care services, with the mandate of providing as low a level of service as can be justified in terms of local authority policy on safety and social inclusion, rather than providing the level of service that a disabled person needs to participate in society on the same terms as a non-disabled person. This makes it much more difficult for disabled people to work.
• Lengthy delays in assessing newly disabled workers’ social care needs can often result in those workers becoming unemployed. This contributes to the fact that more than half of all workers become unemployed within two years of becoming disabled.
• Many disabled people are reluctant to access the social care services that they need and are entitled to because of the intrusive and judgemental nature of the assessment process and the inadequate provision that results. This contributes greatly to disabled people becoming unemployed and being unable to re-enter the workforce.
  
• Disabled people have been bitterly disappointed by the introduction of Fair Access to Care Services (FACS), since the name has led them to believe that they will receive increased services on reassessment. On discovering that FACS instead means that their services are being cut in part or full, they have become extremely disillusioned with local authority provision. Many are now refusing to have any further contact with the local authority, severely affecting their ability to work.
  
• Local authorities are reluctant to fund social services departments and direct payments support services to work outside of office hours, and so insist that all assessments, direct payments monitoring etc are carried out during office hours. This causes serious difficulties for disabled workers, and adds to employers’ perceptions that disabled people are unsuitable as employees. It also means that disabled workers are unable to access the direct payments support services that they need.
• Local authorities are moving away from direct payments support services controlled by disabled people themselves and towards provision of support services by charities such as the Shaw Trust. This undermines disabled people’s sense of autonomy, removes any direct control of the service by users and therefore makes it less likely to meet their needs, and in turn affects disabled people’s ability to work.
  
• The introduction of charging for social care means that many disabled people are not receiving the level of care that they have been assessed as needing because they cannot afford it. This impacts on their ability to work and contributes to the 50% unemployment rate among disabled workers.
  
• Cuts in social care provision means that many local authorities are not now providing services such as shopping, cleaning and laundry. This policy impacts on disabled workers in two ways. First, by the time that unemployed and low-paid disabled people have paid for these services themselves out of benefit income, their income is too low to participate in society in any meaningful way. This makes it much more difficult for them to enter employment. And since disabled people are unable to meet the costs of these services in full, their energy is depleted in coping with the shortfall. This both causes unemployment and makes it much harder to re-enter employment.
• The assessment system for social care is based on an institutional model of care and does not take account of independent living needs. Therefore assessment is based almost entirely on the ability to wash, dress, toilet and cook independently, and only these needs are met. Although limited time may be assigned to enable a disabled person to attend a church group or to visit family and friends, there is no place in the current assessment system to look at needs such as

  o ironing (NB: it is impossible to obtain/retain work wearing un-ironed clothes)
  o tidying the home
  o banking and withdrawal of cash
  o posting (and opening and reading) mail
  o ordering and collecting prescriptions and other pharmacy items
  o attending medical appointments
  o support with household management including bill payments and supervising meter readers, plumbers and electricians etc
  o shopping for clothes and household items
  o buying newspapers
  o small household tasks such as changing bulbs and replacing fuses
  o maintenance of specialist equipment such as wheelchairs.

• There is also no room within this model of care for time to be spent talking to the client, although a social care worker may be the only person that a disabled person sees during the day. And while shopping, cleaning and laundry are included in the assessment, these needs are not then met within the care package under FACS. This adds to and increases social exclusion, making it much harder for disabled people to enter employment. It also depletes disabled people’s energy in trying to cope with the shortfall in services, causing unemployment as well as making it much harder to re-enter employment.
  
• There is no social care provision to allow disabled people to participate in trade union activities, yet trade unions are the only form of protection against discrimination at work. The Disability Discrimination Act Code of Practice for Trade Organisations suggests that the responsibility for providing social care for trade union activities falls on the trade unions themselves. However, the National Union of Journalists, represented by Thomsons, the main trade union solicitors, has already been successful in arguing to a Tribunal that there is no such responsibility placed on trade unions, because there is no similar responsibility placed on employers. Without social care provision for trade union activities, disabled people are unable to take advantage of their trade union membership, contributing greatly to the 50% unemployment rate among disabled people and the fact that more than half of all workers lose their jobs and are unemployed within two years of becoming disabled. If the financial responsibility rests solely with the trade union, there is a disincentive for trade unions to recruit disabled members and to engage them within activities. Access to Work provision should therefore be extended to cover trade union activities as a matter of urgency, and trade unions’ responsibility to make up any shortfall should be clarified.
• The expertise of the disabled person themselves and their chosen support worker is ignored during social care assessments, with the sole responsibility for judging social care needs left to the social worker using an institutional model of care assessment. Yet the only contact that a social worker has with a disabled person is the time spent carrying out the assessment, leaving them incapable of judging need accurately even if the assessment model was adequate (which it is not). This results in inadequate care provision, causing disabled people to lose employment and making it extremely difficult for them to re-enter employment. It also undermines disabled people’s sense of autonomy and independence, and this too affects their ability to work.
  
• The time allotted for social care tasks is based on an institutional model of care that greatly increases the passivity and dependency of the person receiving it. For example, local authorities commonly allot half an hour in the morning to get a disabled person out of bed, washed, dressed and breakfasted, and another half an hour in the evening to get a disabled person fed, undressed, washed and put to bed. These tasks can only be achieved in this time frame if the disabled person is completely passive in the process, as supporting a disabled person to carry out these tasks at their own pace — or even taking direction from the disabled person as to how to carry out these tasks — takes far longer. This undermines a disabled person’s sense of autonomy, making it far less likely that they will have the independence of mind to be able to work.
  
• The lack of a national scheme and standard for social care means that disabled people who are required to move for work face serious delays in having their care package reassessed, and often face cuts in their package if their new local authority has a different policy to their old authority. This means that many disabled people opt for redundancy rather than attempting to move for work, while others who do move still lose their jobs because of the delays and difficulties in obtaining adequate social care in their new location. Disabled workers who require social care are also disadvantaged because the lack of flexibility in social care provision means that they are unable to attend residential training courses or to travel occasionally for work; jobs which require frequent travelling are impossible because of the lack of flexibility in provision.
• Although social care within the workplace is provided for within the Access to Work scheme, there is no similar scheme for job seekers. Job seekers requiring, for example, transport to the Job Centre and a support worker to assist with job searches have no access to funding for this. The Access to Work scheme should be extended to job seekers to enable disabled people who require social care within work to re-enter employment.
  
• Local authorities are clawing back surpluses that disabled people build up in their direct payments accounts. However, recruitment costs can be extremely high, and the hourly rate for agency provision during recruitment periods is far more than is received within the direct payments budget. Without adequate surpluses, social care provision can collapse during recruitment periods, causing unemployment.
• The misuse of the word ‘carer’ infantilises disabled people and undermines their sense of autonomy and self-worth, affecting their employment opportunities. Within the correct usage, ‘care workers’ provide care for children plus the very small minority of adults who are unable to direct their own lives, while ‘support workers’/’personal assistants’ work for disabled people who require support but can direct their own lives. ‘Carers’ provide unpaid care for children and those adults who are unable to direct their own lives; other unpaid workers provide support, not care, for disabled people who require this but who are unable to access adequate and appropriate social care services. Disabled people who think of themselves as child-like and incapable are unlikely to be able to work. Support workers who think of themselves as carers undermine disabled people’s autonomy, making them even less likely to be able to work. The misuse of the term ‘carer’ also fails to recognise and so provide support for disabled people’s caring role towards children and parents.

Social Care, Direct Payments and Employees

We support the move to Direct Payments for every disabled person who can benefit by them. As well as the many other benefits, the unreliable and inflexible nature of agency provision has a serious effect on disabled people’s ability to work. For example, if an agency worker is late or fails to arrive in the morning, as is all too common, a disabled worker will be late for or miss work altogether, leading to unemployment and making it impossible to re-enter the workforce. When a disabled worker is unable to choose what time they go to bed, but instead must cooperate with an agency timetable that forces them to go to bed as early as if they were in an institution, their sense of autonomy and self-worth is seriously undermined, also affecting their ability to work.

We are, however, deeply concerned that, in the move to direct payments, the interests of social care workers have been ignored. Overall, the role of social care workers is unrecognised, and their work is regarded as being low-status and undemanding. The fact that social care workers provide a range of expert, complex and demanding services directly to disabled people, while social services departments merely administrate and have only second-hand knowledge of their clients’ needs, is ignored by local authorities. Like social workers, many social care workers are graduates, and now have high student debt burdens too, but this is unrecognised by local authorities.

• Many local authorities have frozen the hourly rate for direct payments for a number of years, and we are not aware of any local authorities that implement an automatic increase annually. This means that personal assistants employed through the direct payments system have no annual pay increase, while local authority social care workers enjoy this benefit automatically. We urge that direct payments budgets rise annually by at least the same percentage as local authority salaries. This will also aid disabled people in retaining their personal assistants and will in turn make it easier for disabled people to retain/obtain employment.
• The amount payable for direct payments varies widely from authority to authority, but takes no account of local employment costs, only of local authority budgets. We urge that, as with local authority pay scales, the rate is set nationally, with increases comparable to local authority London weighting payments as relevant.
• Social care workers are generally excluded from ‘key worker’ housing schemes. We urge that social care workers are recognised as key workers and included in these and other schemes as of right.
• Social care workers employed through the direct payments’ scheme have little or no access to training other than that provided directly by the employer acting as a trainer. Meanwhile NVQ social care courses are based on an institutional rather than an independent living model and therefore are unsuitable. All direct payments users should have access to centrally provided and funded training for their employees in order that social care workers can enjoy professional development opportunities in the same way that social care workers employed directly by the local authority do.
• Disabled people are becoming increasingly reluctant to employ women as personal assistants because of concern and confusion about the new maternity legislation. In particular, they are concerned that they will have to spend their direct payments budget on supporting an employee through pregnancy and motherhood, while their social care needs go unmet. There needs to be clear national guidance for direct payments users about their obligations, and central funding to pay any costs arising from pregnancy.
• In order to cut costs, many local authorities are now introducing annual reassessments for social care clients under FACS, and are cutting provision where assessed needs or local authority policy has changed. This increases job insecurity for personal assistants, and means that the direct payments users can be left in a position where they are unable to meet statutory notice periods and fund statutory redundancy packages.

Funding

We entirely disagree with the Government’s assertion that improvements to services can be carried out on a cost-neutral basis. Since services are completely inadequate at present, while social care workers are under-paid and under-valued, improvements can only take place if additional funds are provided.

We would also point out that, when so-called ‘volunteers’ are forced to take on duties that should more properly be carried out by professionals, the Government is taking away jobs from social care workers. The reduction in unemployment that would result if social care provision were properly funded should be taken into account when costing improvements to services.

We are also deeply concerned that the costs of moving to a new system of service delivery will result in further cuts in services without additional funding being provided. The cost of introducing Fair Access to Care Services, including the system of annual reassessments, has already resulted in widespread cuts. Direct payments budgets have been frozen, services have either been reduced or removed completely, and contact with social workers has been reduced to the annual reassessments.

Without additional funding, local authorities will only be able to implement more changes to the social care system by cutting services even further. We believe that funding should be based on need, rather than services being provided according to the funding allocated by local authorities. Need should be assessed before budgets are drawn up, and additional government funding provided as necessary.

Dr Ju Gosling, Co-Chair, TUDA, July 2005

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