Ali’s response

The proposed policy on charging for care services is unfair to disabled and older people: it is immoral, discriminatory, and will ultimately result in increased cost to the council.

The proposals are presented as ‘fair charging’, when in fact they fly in the face of equality, as people with greater needs will pay more than those with fewer needs.  

It is disappointing that RBK who, as a once progressive council who did not charge for social care, have, in recent years, chosen to adopt a punitive approach to community care by following in the footsteps of other councils, who continue to believe that disabled and older people have no life beyond their care and support needs.  

Indeed, it was Kingston Council who, during Jenny Webb and Roy Taylor’s tenure, pioneered one of the country’s first Independent Living Schemes in 1988; an era when it was not legally permissible to make a direct payment to individual disabled people to buy their own support that would enable them to have a life based on freedom, choice and control. There was passion and determination to understand and overcome the barriers that disabled people faced, and a strong political commitment to genuinely empower disabled people to work, have their own home and a family, and to otherwise enjoy a life that non-disabled people expect. There was a will and Kingston found a way.  

The present policy which introduced means-testing in 2004, and sought to elicit 50% of service users’ disposable income, was then vehemently opposed by local disabled people, on the grounds that disabled people would be subjected to intense scrutiny, and that a limiting of opportunities and quality of life would inevitably result.  

Now, the council is considering an even more aggressive regime that will further impoverish those in most need, create despondency, despair, illness and conceivably premature death.

It is policies of this nature, not impairment, which force older and disabled people to fear a life with no prospects, independence or freedom, and to consider assisted suicide as the only option.

The charge being considered is put forward in the guise of putting people in charge of their own destiny with Personal Budgets, whereas the real objective is an attempt to rid the council of any responsibility towards older and disabled people and to help plug a gaping hole in the council’s finances. 

The council is urged to consider the ethical issues of this proposal, and not allow income generation to turn this proposal into policy.  

Under the proposed regime: 

Example A – Mrs Anon needs help cooking and serving a hot meal once a day. She uses her personal budget of one hour per day for light domestic work, which costs her £122.71 per week.  

Example B – Mr Nona has a similar amount of savings and also is required to pay 100% of care costs. However, Mr Nona needs assistance to be hoisted/lifted out of bed, seated comfortably in his wheelchair, enabled with breakfast, assistance with bowel evacuation, bathing and dressing, hoisting back into his wheelchair, full grooming and assistance with final preparations for work. After work, Mr Nona requires assistance to change into casual dress, cook and eat a meal. He needs assistance with bowel and bladder management, physiotherapy to exercise immobile limbs, domestic duties, and with the physical aspects of Personal Budget administration. Further assistance is required for an evening out with friends, travelling, personal care, being hoisted into bed, recharging his wheelchair, scratching his forehead, putting the light out and turning in bed 5 times during the night. Based on the figure of £17.53 per hour and no upper limit on charges, which is envisaged as being imposed by the council, Mr Nona’s weekly charge would be £2,331.49

1. Using the two very realistic examples A and B above, it is transparently clear that inequality will result, as personal care and support needs are not matters of choice, but essential to maintain well being and a dignified life that has meaning and purpose. Indeed, Example B will pay more than Example A. No one should be in any doubt that the more complex a person’s support needs, the more one is going to pay. The proposals are a tax on disability. 

2. Non-disabled people are not subjected to regimes of financial scrutiny just to get out of bed, use the toilet and have something to eat. If disabled and older people are being taxed on disability, then parents who have children through choice and who have disposable incomes, should rightly be charged a fee, in addition to Council Tax, for schooling those children. Likewise, the council would not dream of charging every RBK household a mere £10 a week, on top of their council tax, for refuse collection, which would generate revenue of £31,941,520 pa. It would of course be ‘political suicide’, but the council has no such scruples as they continually target disabled people who are often the voiceless minority, who will not usually create political shockwaves.  

3. New government initiatives are supposed to ’level the playing field’ between disabled and non-disabled persons. These council proposals are likely to impede this particular aim, as much more, or all, of people’s income will be absorbed to pay for vital care and support. This will force many severely disabled people back to a life commensurate with the dark ages, where they were incarcerated and lived only to exist.

4. Furthermore, the ‘benefits maximisation check’, seeks to benefit only the council, not service users as inferred in the council’s Executive Committee report of 29 September 2010, as the council will simply claw back any additional benefit entitlement. Disabled people perceive this proposal on par with an act of money-laundering, as state benefits paid to disabled people to live a decent life, will be received, and then removed by the council who would otherwise not be able to claim this revenue. The ‘benefits maximisation check’ will benefit no one but the council. 

5. The proposed system is manifestly unfair as it has no regard for how prudent one has been or how hard individual people have worked to achieve what they have. The proposed policy will penalise those who have taken responsibility for themselves, to work and save, and contribute to a system that should rightly be offering unconditional support, rather than making people feel that they are inconsequential and that their efforts to seek financial independence have been a waste of time.

6. Personal Budgets, ‘Putting People First’, and ‘contributions’, are little more than euphemisms for increasing service charges and to dissuade people from taking up services. It should be made clear that there is no requirement to charge, as the Dept of Health merely issues ‘guidance’ for councils, who take it upon themselves to charge. 

7. Members and Officers must understand that there is no requirement for a new system to be in place by 1 April 2011. Charging and Personal Budgets are two totally separate issues. Disabled people believe that those involved have insufficient understanding, and therefore are not qualified to make radical decisions about services that underpin disabled people’s lives, or there is a deliberate attempt to withhold information to limit adverse reaction from social care users. 

8. The recent Government Spending Review renders this policy proposal firmly out of date. The government have allocated an extra £2 billion to pay for health and social care.

9. RBK has been allocated an increase in Social Care Funding and this increase should be ring fenced for Social Care, thereby negating any perceived necessity to charge.

10. A Personal Budget offered with an outrageous charging regime is an utter nonsense, as many people will be expected to fund their entire Personal Budget; meaning that they will require permission from the council on how to spend their own money.

11. As the Government has removed ring-fencing from council budgets, giving Local Authorities freedom to spend Government funding how they choose, disabled and older people have no guarantee that the council will not spend the increased Social Care grant in other areas.

12. It is perceived that this proposed policy change has come about because the council has not realised the savings or income it hoped to generate by changing the policy in 2004, when it removed the flat rate charge for all service users and introduced means testing. Indeed, it has made a loss, as anticipated and stated by disabled people at the time (see table after point 20).

13. The proposed policy will likely attract higher public expense for the council, i.e. if disabled people have no incentive to work and save, their care needs will continue to be met from council budgets, with no contribution. Any Useful savings, e.g. to buy a house, replacement vehicle, home adaptations or improvements, to name but a few, will be clawed back to pay for care. It is indeed questionable whether such a draconian decision would amount to direct or indirect discrimination and, therefore, subject to the council and its policy to judicial review under the Equality Act 2010.

14. The extra work and cost involved in needs assessments, financial assessments and reassessment and collection of monies will undoubtedly place a further burden on council budgets, but with no calculations available, the council is taking a very blinkered approach to the policy proposal. It seems most improbable that a single individual will be able to undertake all this work. Therefore, additional staff will need to be recruited or significant delays and potential hardship is likely to occur. No protocols have been drafted, nor are there financial figures to demonstrate that the policy is viable. 

15. In any event, no two service users will be in the same financial position. Income and disability-related expenditure, as well as their personal circumstances would be different in every case. A change in any of these factors will require the charge to be recalculated, thus perpetuating a never-ending cycle of financial assessment. In some cases service users may dispute calculations and appeal decisions made, which will require an entirely separate appeals procedure and more cost to the council.

16. Disabled and older people believe that the council wants to discourage people from using services that it perceives as nothing more than a financial drain. The intention to claw back 100% of people’s disposable income to pay for care will discourage people from using the services they need. This will lead to health breakdowns and use of more expensive services in the long term. The policy would also be contrary to the council’s obligation to safeguard vulnerable adults. 

17. The proposals fail to take into account the hidden cost of disability and the need for disabled people to save substantial sums of money for accessible vehicles (£20k – £50k), specialist driving controls (£40k – £100k), specialist wheelchairs (£7k – £30k), extra heating cost, soft food diets and other dietary requirements, and the extra cost of employing a personal assistant when holidaying or in the course of normal day to day activities. How will disabled people save for such essential items of equipment for which no statutory funding is available, if they have 100% of their disposable income taken away? 

18. Indeed, the council have not defined what essential costs of disability will be taken into account and how such a dispensation, if any, will be awarded and by which department or officer. Such ad hoc arrangements will place disabled people at the mercy of individual council officers to interpret the policy as they choose, leaving people penniless and vulnerable.

19. Similarly, the cost of independent living has not been taken into account or acknowledged. Examples of this are; abnormal wear and tear to the home, frequent breakages by employees, extra supplies such as soap, hot water, toilet tissue, etc. and other costs associated with employing a Personal Assistant or carer.  

20. From the following table, it is evident that the income generated under the current charging policy is less than the funds collected under the pre-2004 flat rate charge policy, demonstrating that means testing realises no financial benefit.

  Number of service users Weekly charge (including inflationary rise) Annual revenue generated from care charges
Pre-2004 flat rate charge policy (55% of disability living allowance). 500 £42.72 £1,110,720
2004 – 2010 charging policy 500 £39.51 (average) £1,027,400
TOTAL LOSS (in council revenue over 6 years) £499,920

21. How can the council be confident about the new proposals when there are no financial forecasts to support this policy change or evidence of income streams. Indeed, how does the council know that they will make savings when there are no such figures to substantiate their claim?

22. For many disabled people who need assistance to get dressed, eat, use the toilet and who otherwise rely on incidental strangers to carry out all other intimate and social human functions, their finances are typically their only remaining morsel of privacy. It is fundamentally wrong to means test people for services, that without, would lead to illness, an inhumane existence and/or death. 

23. The proposed policy is regressive and unsustainable, as people with moderate savings will quickly have their savings whittled away, requiring further assessment and reinstatement of council funding; so much bureaucracy, added administrative costs, disruption, uncertainty, worry and distress to people’s lives, with no evidence of any savings for the council. 

24. In these circumstances, Kingston Council needs to examine every nook and cranny, in order to determine what cuts can be made and revenue generated across the whole council, and not target older and disabled people as a means of cost cutting or boosting funds.

25. The council cuts, as envisaged, will ensure that older and disabled people will be affected disproportionately, as not only will they have to bear the same additional cost as non-disabled people, but also the additional charge of social care.

Disabled People urge Councillors to recognise that they may require these services one day! Imagine having to use all of one’s disposable income, and not having sufficient to buy a Christmas present for the grandchildren!

The proposal is truly shocking.

Recommendation

A. The council must not adopt this policy.

B. Although any charge for social care places disabled people at a disadvantage, in relation to non-disabled members of society, the Direct Payment User who has written this particular response, asks the council to reinstate the flat rate service charge of 55% of the Disability Living Allowance care component (or Attendance Allowance) for all users. This will ensure that Councillors, Council Officers and the users of services can easily understand the charging policy. It will also reduce costs for the council and allow for accurate financial forecasts and budgets to be produced.  

Most of all, this will result in a much fairer, just and equitable policy, that will:

• place people with high and moderate assistance needs on a level playing field with their non-disabled counterparts;

• allow disabled people to work and build remunerative security without financial penalty;

• have charging based on a percentage of Disability Living Allowance. This creates parity between service users with high and low assistance needs;

• maintains the financial privacy of disabled people along similar lines to non-disabled people;

• allows disabled people to more easily absorb disability related hidden costs;

• enables disabled people to participate as useful and independent members of the community rather than a homogenous group, burdensome on society;

• empowers disabled people to use their initiative and live a quality life.

C. The council is urged to hold fire on a policy change until they have produced tangible figures and engaged with disabled people at strategic level. Disabled people ask the council not to use the consultation exercise as a smokescreen for an agenda that is already set. Indeed, there must be “nothing about us, without us”!