Disability Working Group Satellite Group 4
Paper on Direct Payments for a meeting on 23 August, 2005
N.B. This paper should be read in conjunction with Direct Payment Scotland 's paper on direct payments and the Scottish Executive's document, "Statistics Release; Direct Payments Scotland , 2004"
Recommendations
1. The Scottish Executive need to have a unified approach, across all departments, to policy relating to disabled people. This policy should be based on the philosophy of empowering and resourcing of disabled individuals to take responsibility for their own lives and participate as equal citizens in society. The social model of disability and the principles of independent living should underpin all future policy initiatives in this area.
2. More training, at all levels from undergraduate to management training, needs to happen. Such training should include basic disability equality training, coupled with training on the principles of independent living and the practice of direct payments and given by qualified disabled people and requires full and sustainable funding.
3. Although some additional money has gone to local authorities to encourage the development of support organisation; other 'resource transfer' type funding over a set period of time also needs to be provided to stimulate and/or meet increased demand.
4. Community Care charging needs urgent review - it creates a post-code lottery, impedes service users' mobility throughout Scotland, and perpetuates a poverty trap that effectively excludes some disabled people from gaining employment
5. Ordinary Residence legislation needs to be changed to allow for freedom of movement, generally; and freedom of movement within the labour market, in particular.
6. Direct payment paperwork needs to be simple, reader friendly and available in differing formats
7. Local authorities need to keep day-to-day employment issues at arms length; otherwise they could be seen as the employer. Support should come from an independent user led organisation, funded in total and on a sustainable basis by the local authority.
8. The support organisation networks (one in the north of Scotland, the other in Central Scotland) require urgent support to main its important roles of maintaining national parity in knowledge, skills and standards.
9. Some effort is required to make sure that everyone, including local authorities and their community care clients, are aware that the Scottish Executive and each of its respective quangos are committed to the continuation of direct payments and the empowerment of community care recipients to participate as equals in the political and socio-economic life of society.
What Are Direct Payments?
A direct payment is money paid by the local authority directly to a person whom it has assessed as needing community care services. The local authority makes the payment instead of arranging services. The person uses the payment to purchase the relevant services (for example help in the house, to go out to work or with social activities).
In practice, recipients often employ their own personal assistants (helpers) but this is not a requirement. Support can be purchased through agencies or in the form of services. Recipients cannot employ any relative or partner living with them in the same household.
The key benefit is that direct payments increase the amount of choice, control and flexibility disabled people have over the way they live their lives.
What was the Previous Legislation on Direct Payments?
The Community Care (Direct Payments) Act 1996 allowed local authorities to make direct payments to disabled people with community care needs. However they did not have to offer people direct payments.
What has changed with the Community Care and Health ( Scotland) Act?
On 1st June 2003, it became a duty for local authorities in Scotland to offer direct payments to disabled people who require community care services. The Act now ensures that each authority must have a system in place to offer direct payments to anyone who is eligible, willing and able to receive them.
Eligible groups are those aged 16 or over, who have:
- a physical or sensory impairments
- a learning or mental health difficulties
- an illness (e.g. HIV or AIDS, cancer)
AND
- parents, or those with parental responsibility to purchase services for a disabled child
- disabled parents to purchase children's services to assist them in their parenting role
Direct Payments have become available to all community care client groups from April 2005. Previously direct payments were only available to 'disabled persons'. However people who have care needs because, for example, they are frail, receiving rehabilitation after an accident or operation, fleeing domestic abuse, are a refugee, homeless, an ex-offender, or recovering from alcohol or drug dependency, will become eligible to be considered for direct payments, as the rolling programme agrees the guidelines for their implementation.
Recipients of direct payments are now able to purchase care services from local authorities. Prior to 1 June 2003, local authorities were not allowed to sell their services to direct payments recipients. Allowing direct payments recipients to buy services from any local authorities gives them greater choice and control over the delivery of services. It also helps make direct payments available to people in remote areas where the local authority may be the only provider of some services.
Prior to 1 June 2003, there was a low uptake of direct payments amongst people with mental health problems or learning difficulties. Now a representative of a person who is unable to give consent themselves can consent to and receive direct payments. This means that attorneys and guardians, with the relevant powers, are able to make the necessary arrangements to ensure that a person can receive direct payments. By allowing a representative to consent on someone's behalf, more people with learning or mental health difficulties will be empowered through direct payments.
Parents are also allowed to consent to direct payments to purchase the services their children are assessed as needing.
Background
It is important to understand the background to direct payments.
Most non-disabled politicians, bureaucrats and professionals consider they are an end in themselves: but to disabled people within the independent living movement a direct payment is a means to an end.
The end is 'independent living', i.e. the right to choose and control the total management of one's everyday life and affairs.
And the outcome of independent living is the freedom to participate as equal citizens in the political and socio-economic opportunities available to all within an inclusive society.
Independent living is about the redistribution of power within the lives of disabled people, so that they are themselves resourced to take their equal share in the life of the community: and direct payments are the mechanisms through which that can be achieved.
A direct payment is not merely about another way to meet the personal and social care needs of a disempowered client previously reliant on dependency creating social work services.
It is a warrant to empower and equip the individual to be in control of their own life as an equal citizen of the state.
Direct Payments came from the thinking of disabled people in the disabled people's movement around the concept of 'independent living' (IL) - which started in America back in the 1960's
Today, the fundamental philosophy of IL is at the forefront of British social policy. This principle is that everyone has rights and responsibilities which society should foster, rather than needs dependant upon welfare. This is now being promoted in the policies of New Labour. Not only need we look at the No 10 Strategy Unit report "Changing life chances for disabled people", but we can look at the areas of family support, crime, welfare benefits to see this happening.
The fundamental philosophy of independent living is:
- That all human life is of value
- That anyone, whatever their impairment, is capable of exerting choice
- That people who are disabled by society's reaction to physical, intellectual and sensory impairment and to emotional distress have the right to assert control over their lives
- That disabled people have the right to participate fully in society
A direct payment is a key to one of the twelve basic rights of independent living - that of personal assistance.
Time and space do not allow discussion on all twelve rights. However, since it was my wife, Monica Elder, who first wrote about them back in 1982, I'm duty bound to mention them. Being a social worker, she called them 'basic needs'.
She first identified seven of them - information, peer support, accessible environment, accessible transport, barrier free housing, suitable equipment, and finally personal assistance. To this list, later writers have added education, income, employment, health and peer advocacy
But the origins of independent living go back to the 1960's; to flower power and the civil liberties campaigns in America.
Ed Roberts, a severely disabled student at Berkeley, California, spent most of his day campaigning for the human rights of Porte Ricans. Then he suddenly realised his own human rights as a disabled person were being violated. When his fellow campaigners were going to the bar to congratulate themselves on a hard day's campaign, he was being bussed back to his segregated hospital accommodation which was the only place where he could get personal support.
With a few other disabled people on the Berkeley campus he set up a campaigning group called the Rolling Quads. They forced the State of California to give them money directly to pay for their own support and housing.
Later such 'payments' were extended to disabled people throughout the State of California and Ed's first job after graduating was to set up the first 'Centre for Independent Living' in Berkeley. Such Centres are now worldwide
In England around the same time as Ed Roberts a man called Paul Hunt was languishing in a Leonard Cheshire Home in Hampshire. He had heard about this new idea of 'independent living' and wrote a letter to the Guardian to find other disabled people wishing to discuss the idea of disabled people living in community.
To his amazement severely disabled people, some in similar situations to himself, replied. This was the beginnings of the Union of the Physically Impaired Against Segregation and through their journal 'Disability Challenged' some mammoth concepts were developed - concepts such as 'the social model of disability', 'independent living' and 'direct payments'.
UPIAS dissolved itself when the British Council of Disabled People set up in 1981, and through their 'Independent Living Committee' started a campaign to give disabled people the right, through the means of choosing, paying and controlling personal support directly, to live independently within the community.
Again time and space do not allow for a description of the campaign which started off by achieving some 'indirect payment' schemes, i.e. via a third party, in such local authority areas as Hampshire, Kingston and Staffordshire.
The BCODP campaign also promoted research into 'indirect payment' schemes. Such research was discussed at a Joseph Rowntree Foundation seminar on independent living in 2000, which reported that direct payment schemes were 30% - 40% cheaper than direct services 1.
On the 1st of April 1997 direct payment schemes became legal, but not obligatory. They were "…to increase users' independence by giving them more control over the way community care services they receive are delivered."
In Scotland on 1st June 2003 it became mandatory upon local authorities to offer direct payments to all disabled people, but they were also to be offered, on the basis of a rolling programme, to all community care service users as from 1st April 2005. This is not the case in England and Wales.
Research carried out by Sally Witcher 2 and her colleagues in 2001 on how well Scottish local authorities were implementing the 1996 legislation emphasised the importance of user led support organisations.
This was accepted by the Scottish Executive and is now government policy. User led support organisations assist direct payment recipients manage their payments and support services. Most are called Centres for Independent (Integrated) Living (CILs). Those user led support organisations which are not called a CIL may or may not follow the same philosophy, principles and practice of a bona fide CIL.
All CILs follow the same philosophy of the social model of disability; the same basic principles of independent living; the same governance of services being managed and controlled by disabled people; and the same ethos of ensuring services are designed and operated to maximise the empowerment and inclusion of disabled people.
Services of CILs are based on twelve rights of independent living. However each CIL has a different emphasis reflecting local need; all have the kernel service of supporting those who employ personal assistants. For example, Glasgow CIL has the addition of housing and employment services; and Edinburgh CIL has an advocacy and counselling service.
Other services common to most CILs and some user led support organisations, but which non user led support organisations find difficult to provide are:
- PEER SUPPORT - listening to people in a similar situation but who have managed to resolve it is invaluable
- INFORMATION - there is a plethora of information, but it is important to recognise the difference between cold information from a data base and information coming from a shared experience - e.g. not just information on an accessible hotel, but how to manage with a personal assistant when away from home
- ADVOCACY - peer support to negotiate and propose solutions from the point of view of the direct payment recipient is essential.
- TRAINING - this is so important and unique to direct payment recipients who may or may not have experience of the labour market. Ordinary management training for example cannot anticipate the issues of disciplining, or inducting staff via a pointer-board.
In addition, the Scottish Personal Assistant Employers Network (a national user led support organisation) has a coaching and development programme for its members. Built around the lived experience of PA employers this illustrates how disabled people can develop their own expertise into a training and management tool. Also, working with a management consultancy and legal firm, SPAEN can now provide a 24 hr employers' advice and indemnity scheme to its members anywhere in Scotland.
- OUTREACH - CILs and other user led support organisations are in an ideal position to do missionary work within institutions, schools, day centres, or where people are trapped in their own homes. Sharing ideas, offering a real alternative, CILs and other user led support organisations can help people in institutional settings see independent living in action
- Finally, POLITICS - service led support organisations based on charity model stay clear of politics and do little to change society. CILs and other user led support organisations based on a civil rights model of empowerment and inclusion, with a strong collectivist ethic embrace politics and desire real systematic changes in society to make it inclusive and supportive to all.
But the real value of any user led support organisations is the higher expectation of the end user of the service. As Hugh said to a researcher of user led support organisations:
"I don't mind being let down by the professionals …. they will fail you because it's a job at the end of the day. I do feel a greater depth of disappointment with the DCIL, because I expect them to have the gut feeling that I have when I deal with disability issues. And if that doesn't come through then I am disappointed." Hugh, a PA employer Morris, J., (1993) "Community care or independent living" Joseph Rowntree Foundation
Yet, despite all this and all the research findings on the value of user led support organisations, very few local authorities support their development.
Facts and Figures
Please refer to the attached document regarding a statistical breakdown of direct payments. Unfortunately these are based on data collected in April 2004. The April 2005 data will not be published by the Scottish Executive until September 2005.
The April 2004 figures show that the total direct payments' budget for all 32 local authorities was £8.3m, assisting 912 people. This gives an average annual direct payment of £9.1k.
Fife had the highest number of recipients, 190, and spent £1.5m - making an average payment of £7,900.
Edinburgh, however, spent the most, £2m, on 120 people - making an average payment of £16,500. This reflects differences in policy, where Edinburgh tends to use direct payments to meet the needs of people with more severe physical impairments.
Inverclyde was the only local authority in 2004 with no direct payment recipient.
Time did not allow searching for similar budgets on traditional home and day care services.
However, other Scottish Executive statistics allows the 912 recipients to be compared with the 70,000 receiving home care and the 22,000 receiving day care. Other relevant statistics in home and day care are as follows:
The 70,000 home care recipients
- receive an average of 7.8hrs per week
- from 12,800 wte staff
- and have a total of 378,000 of direct contact hours
The 22,000 day care recipients
- receive an average of 2.6 days of care per week
- from 4,800 wte staff
There have been a number of research studies which show direct payments are the most cost effective approach to supporting disabled people in the community 3.
Yet, the high dependency on traditional services, as depicted in the statistics above, not only by community care recipients, but by community care providers, has impeded the transfer to this more cost effective approach. This will be discussed in the next section.
Key issues: problems
For more information concerning this section please refer to the paper on direct payments by Direct Payments Scotland.
Basically there are four main problem areas. These are:
1. Attitudes
2. Training
3. Finance
4. Organisation
Most of the anecdotal data below has either come from my own observation or been relayed to me personally. I cannot vouch for the accuracy of such information. However, I am confident that it has come from reliable sources.
Attitudinal issues
Within the Scottish Executive, itself, there seems to be differences of outlook on disability and disabled people. Within the Department of Education, the 21st Century Review of Social Work seems to be taking an emancipatory approach to services, looking at how social work can empower people to be in control of their own life domain and manage risk. Whereas, the Department of Health and Community Care, seems to have taken a much more disempowering and controlling outlook, preferring risk avoidance to risk management.
The Department of Health and Community Care has already renamed one of their Divisions looking after policy relating to disabled people as 'The Vulnerable Adults Division', even before the forthcoming 'vulnerable adults' bill has become law. This bill, designed to deal with abuse within the adult care industry, erroneously defines all disabled people in receipt of community care as 'vulnerable'; which indicates a presumption that disabled people need 'protecting' rather than 'empowering'.
Within the Scottish Executive, policy makers have generally let the dog's tail wag the dog. Too much effort and attention has been directed towards 'direct payments' rather than 'independent living'. Disabled people within the movement are re-grouping around the concept 'independent living' realising they have lost control over the concept of 'direct payments'.
'Direct payments' are now firmly in the hands of local authorities and the Scottish Executive. Both are painting them in their chosen colours and shaping them to their own particular needs: and the tool they are making can be likened to a bulldozer which is sculpturing the landscape of independent living.
The disabled people's movement feels it is losing sight of their vision of what they want that landscape to be; so, now it is campaigning for the "Right to Independent Living", to reclaim the land being churned up by the bulldozer guidelines and local authority policies designed to limit change and protect existing dependency creating services.
At the local authority level, a number of social workers are very enthusiastic about direct payments. There are a few who are enthusiastic because they understand the concepts and philosophy behind independent living. However, there are others who refer clients for a direct payment thinking the money is 'new money' (which it isn't) and by so referring the social worker feels s/he will ease and quicken the 'process' of resource allocation.
But there are many others who either don't understand the policy and process of direct payments, or feel disabled people will be 'put at risk' by having a direct payment ; so they don't transfer information about direct payments to their clients, or provide misleading information or persuade them not to apply for one.
Finally, direct payments must not be thrust upon all disabled people, some of whom have legitimate reasons for preferring traditional service provision. However, there are some who are so institutionalised within the own life domain that it is hard to show them the benefits and freedoms that independent living accrues. With the lack of money to launch independent living missions, user led support organisations can merely offer a reactive service, leaving many to lead an impoverished life.
Training issues
The lack of basic disability equality training, coupled with training on the principles of independent living and the practice of direct payments all conspire to debilitate policy makers, social work practitioners and disabled people alike
One anecdote exemplifies the need for training, although this may also highlight the way social work services are organised and the lack of lateral thinking on the part of the worker: a woman fleeing domestic violence had support needs due to mental distress. She should have been able to get a payment for that particular support need as it was to do with her mental health but as she was a woman fleeing domestic violence she was not considered eligible. Her total support could have been broken down into what part was eligible for a direct payment and what part was not.
Financial issues
Direct payments are not being impelled by need. They are being impeded by finance. The lack of additional 'resource transfer' type funding has proved to be a major disincentive to local authorities. The Scottish Executive's policy that direct payments should be met from the redistribution of existing budgets failed to appreciate the following:
- Local authorities' first concern is to safeguard existing services and jobs
- Local authorities still have to maintain existing services and buildings, despite a depletion in their use
- Direct payments are more flexible and responsive to individual need. Therefore they are more attractive than traditional dependency creating services; and so demand for support increases.
- Direct payments highlight hidden need, not only among the population at large, but within the population of existing social work clients.
Anecdotal evidence has shown the extent to which finance restraints have limited the independence and freedom of direct payment recipients. Examples of Finance Officers making inappropriate judgements on the assessment of care packages when they are being considered for approval have come to light.
Many disabled people are also bewildered at being told there is no money for a direct payment, but they can still get a traditional service in the meantime. If there is money for a home help, they feel there should be money for a direct payment. But they don't understand money is tied to services - not people. There is definitely a need to reconfigure local authority budgets around individuals, not services.
Apart from the inequity of community care charging, per se, there are a number of discrepancies within charging policies, e.g. a direct service may not be chargeable but the equivalent direct payment is, therefore people are put off applying for a payment.
Moving between different local authority areas with a direct payment is virtually impossible, unless you originate from Edinburgh. Edinburgh's policy of continuing to pay if someone moves outside the area facilitates freedom of movement and allows for freedom to move within the labour market. However other authorities abide by the Ordinary Residence legislation and expect the authority into which area the person moves will pick up the tab. Unfortunately, on most occasions they will not, citing various reasons including lack of money and the need to re-assess the recipient.
Organisational issues
Moving within a local authority area can also pose problems. An example of this is someone moving home within the local authority area but changing social work teams found themselves in limbo, with no-one being allocated to their care management.
There are numerous other problems relating to the organisation of direct payments. For ease they shall be numbered, but they are not exclusive:
1. Direct payment paperwork from social work departments is sometimes inadequate or inappropriate (including not being in an accessible format). Examples of this are neglecting to tell recipients about changes in policy, or inadequately explaining in writing a decision made about a person's application, making the appeal against it even more difficult.
2. Similarly, within some areas of the country, there seems to be needless bureaucracy within the application process.
3. Other anecdotal examples of using paperwork as an organisational barrier is the request for information about a direct payment which is followed up with a huge amount of literature and forms with no support to work through the documents.
4. Finally, financial monitoring forms from some authorities are so complicated that some recipients say they require a degree in accountancy to complete them.
5. A number of local authorities work in contradiction to stated guidelines and interfere in the day-to-day responsibilities of the recipient's role as an employer, including telling them who they can and cannot employ and what they can and cannot pay their staff.
6. Nearly all CILs and user led support organisations are inadequately funded and resourced. This can lead to time limited support being provided to recipients. For example one support organisation will help someone fill in their monitoring forms for a year but if they can't manage after that they are on their own.
7. Some local authorities will only allow the support organisation to meet people after they have been offered a direct payment. This means potential recipients get no information or advocacy or any initial support with self assessment.
Finally, Direct Payments Scotland has come to the end of it's funding from the Scottish Executive. This user led organisation was set up after the Sally Witcher report on direct payments in Scotland to do two things. First, assist local authorities in their implementation of policies and practices; and, secondly to develop user led support organisations. It will close in December 2005, having completed the first of its two objectives.
However, time has run out before achieving the second of its objectives. Not every local authority has a user led support organisation. This is due to the following:
- Some local authorities have chosen to combine their in-house monitoring role with an in-house supporting role
- Others have chosen non-user led organisation to provide support
- One has developed a 'user-influenced' support organisation, which is a non-user led organisation with an 'advisory committee' of direct payment users
All these groups have come together to form an informal network for mutual support. The local authorities have done the same, under the umbrella of the Association of Directors of Social Work. Direct Payments Scotland was providing a similar umbrella and organisational support for the network of support organisations.
The problem now is, with the demise of Direct Payments Scotland, who or what will support the support network? Direct Payments Scotland has helped the group develop its own constitution and it is looking for funding to employ a co-ordinator. However, many of the participants of the network are project workers or local authority workers and may feel unable to take on the responsibility of running an intermediary body.
One last thought, with the demise of Direct Payments Scotland, some disabled people are wondering about the government's commitment to them having choice and control over their lives; and if, indeed, direct payments themselves will end.
James Elder-Woodward
15 August 2005
Footnotes
1. O'Neil, A and Lewis, J (eds) (2000) "Cost effectiveness of independent living: Proceedings of a JRF conference, June 2000
2. Witcher, S, Stalker, K, Roadburg, M and Jones, C (2001) "Direct Payments: the impact of choice and control on disabled people" Health and Community Care Findings No 1 Scottish Executive Central Research Unit
3. Kestenbaum, A (1993) 'Making community care a reality: The Independent Living Fund 1998-1993', RADAR/DIG
Oliver, M and Zarb G, (1992) 'Personal assistance schemes' Greenwich association of disabled people
Zarb, G (1993) 'Evaluation of Haringey On-Call Support Scheme', King's Fund / Spinal Injuries Association