Presentation at the ENIL Seminar in Southampton March 9, 2003

by Ann Macfarlane MBE

Older People & Legislation on Assessment & Direct Payments, Summary of the legal provisions,
by Ann Macfarlane MBE, March 2003

“Sometimes, I have to skip having a bath in order to chase my dreams.”

Introduction

Almost half of all disabled people in the UK are 65 and over and more likely to have a combination of illness and impairment. The most prevalent difficulties for older people are those of mobility and sensory impairments, particularly those that affect hearing and sight. Social Services Inspectorate statistics collected in England for the year 2001-2002 showed that the take-up of Direct Payments and older people had almost doubled from 537 to 1032. Overall numbers across age and impairment groups remain low, with most local authorities having fewer than fifty users on Direct Payments. Cost ceilings for older people are still generally lower despite the fact local authorities can no longer apply age discrimination. For example, in the year 2000-2001 in Staffordshire, the cost ceiling was £179 for older people, and £223 for younger people.

Legislation

Direct payments legislation fits into the framework of a number of other pieces of legislation, particularly those that relate to assessment.

The NHS & Community Care (Direct Payments) Act came into force in 1996, the extension to older people was in February 2000. Up until that time, some local authorities offered and made third party arrangements for older people. Since February 2000, there was been an upsurge in other legislation related to older people. This legislation includes:

National Service Framework for Older People and focuses upon:

• Rooting out age discrimination
• Person-centred care with older people treated as individuals and with respect and dignity
• Promoting older people’s health and independence

Important factors to draw out of this legislation are those that relate indirectly and directly to direct payments are:

NHS Services: NHS services to be provided regardless of age, on the basis of clinical need alone

Social Care Services: Social care services will not use age in their eligibility criteria or policies, to restrict access to available services. In practice, commissioning strategies must be flexible enough to take account of individual needs and eligibility criteria for older people must not to be more stringent than for other groups. For some older people who require non-residential services, it may mean that they have to demonstrate higher needs to qualify for services compared with younger adults. Often, as research has demonstrated, what they often require as a preventative measure, is that ‘little bit of help.’ This leads on to understanding that sometimes a few hours provided at the right time can prevent hospital admission or prevent further hospital admissions. It may mean an older person is able to be discharged home. I am not advocating that older people should manage on a small number of hours, I am highlighting the fact that often older people cannot get any service and are therefore disadvantaged when their needs change. Therefore if they can, through the assessment process, acquire a few hours it may be possible to have these increased through the review process.

Ten years ago, for older people who did have relatively high needs, there was much debate around professional practitioners taking away the independence of older people by placing them in residential care, rather than undertaking a needs-led rather than a service defined assessment. Interestingly, this is still the situation today for many older people because practitioners are caught up with risk assessment rather than needs-led assessment.

Person-centred care: National Health Service and social care services commissioners and providers are charged with treating older people as individuals and are expected to assist them to make choices about their own care. This is to be achieved through the single assessment process, integrated commissioning arrangements and integrated provision of services, including community equipment and continence services. Older people will require appropriate and accessible information if they are to make choices and decisions that will make a difference to their quality of life, whether that is their health requirements, domestic, social, or personal care needs.

The 1999 Health Act focuses on:

Joint commissioning and pooled budgets with the emphasis on a lead commissioner who will provide an integrated approach to service provision rather than working to organisational boundaries. Section 31 of the Health Act details partnership arrangements. It is possible for money to be given by a Primary Care Trust to a local authority who can then translate this into a direct payment for the health care required by the older person. Where it is not possible for direct payments to be made in lieu of health care, the arrangements for the delivery of health care has to be compatible with the increased independence that direct payments are facilitating.

Again, under the Health Act, older people, with information, support and advocacy if or as required, should have input into their lives that is responsive to gender, personal appearance, communication, diet, race, culture, religious and spiritual beliefs! This is where a direct payment could really support this holistic approach and demonstrates the need, in training, to assist practitioners to cross the boundaries and break down barriers. In my role as a training consultant, experience shows that it is usually the statutory sector planners, commissioners and providers that put up the barriers. Training from their perspective, often focuses on an individual/medical model approach that makes it difficult for them to understand the needs of older people within a needs-led, Independent Living/rights based framework. It has been suggested in the Association of Directors of Social Services Older People’s Committee that more imaginative commissioning should include participation, life-long learning and leisure!

Critical issues arising from a needs-led/Independent Living/rights based approach are:

• the importance of agencies agreeing arrangements for assessments, whether single or separate assessments, placing the older person in the centre of the process, ensuring that the older person understands this process and what their rights are in determining outcomes. The older person also needs to know time scales around the assessment process, their right to question and complain, the review and monitoring processes.
• Information gathering and sharing between the different agencies, thus avoiding older people and those who support them having to provide the same information to different people.
• Recognition of greater prevalence of some illnesses among specific groups. Provision must be culturally appropriate and sensitive and serve the needs of those for whom their first language is not English. Direct payments can be helpful in providing the flexibility that personal assistants can offer when people have fluctuating impairments.

For older people, there is a recognition that

Intermediate care – delivered between primary care and specialist services is to prevent unnecessary hospital admission, support early discharge and reduce or delay need for long-term residential care, mostly aimed at older people.

Fair Access to Care, implemented in April 2002, provides a national framework for councils to use when determining their eligibility criteria for supporting adults of any age. They will be expected to adopt a consistent approach to defining priorities for meeting needs in order to promote independence and quality of life. This includes a common understanding of risk assessment and the focus for reviews. Fair Access to Care also focuses on rooting out age discrimination and levelling costs up for older people rather than down. However, this aspect will require careful evaluation and monitoring. .

Other Acts to be aware of include:

Supporting People

This Act separates care arrangements from the variety of housing situations in which many disabled people and older people live. In practice this is difficult to achieve as housing providers are tied into a process of care that is purchased by block contract. This is often much the same kind of support that has traditionally been provided in ‘sheltered’ housing. In theory the legislation suggests that people can be supported with flexible care arrangements and assist people to move between different housing environments and between different areas in the country.

1999 The Human Rights Act

The Human Rights Act sets out rights in principle and has many issues for older people, including privacy and communication.

2000 Valuing People

Valuing People sets out Government plans for people with learning difficulties. There is much work to be done that supports older people with learning difficulties, many of whom have unfulfilled aspirations and many who are yet to move out of institutions and will do so by 2004. Aims include developing supported living approaches and modernising day services. One small achievement would be to free up the money spent on day centres for older people and transfer the money into Direct Payments with support, where appropriate, to assist older people with making wider community choices.

2001 The Health & Social Care Act

This Act identifies gaps between various stakeholders, health provider agencies, social services and older people and how they conceptualise Independent Living. There is a focus on identifying practical barriers, finance, organisational and political barriers, to adopt a consistent approach to develop and promote independent living in line with departmental policies. There is a need for the stakeholders to ring fence money in order to achieve targets and goals. As has been identified, very few health commissioners and providers have an understanding of Independent Living from a user perspective. Their focus for disabled people is on rehabilitation rather than advocacy, social inclusion and Direct Payments. Few Primary Care Trusts, have partnership arrangements with the voluntary sector and local authority departments, such as housing and education. Primary Care Trusts, pivotal to much of this joint working, have done little work around older people and Direct Payments. They must include older people and user groups, particularly as there are few parallel groups to those of organisations of disabled people. A related issue is that of Independent Living and older people. Research shows that independent living stems from the Disabled Peoples’ Movement and is unlikely to be found on the agendas of older peoples’ groups that have come a very different route.

Structures in the Statutory Sectors

In the National Health Service, many of the structures and practical issues focus on health, usually ill health. This leaves little room for debate in terms of Independent Living and Direct Payments. The challenge of understanding and delivering Social Model services lies with health workers. Added to this is the fact that there has been little or no involvement or participation of older people in determining health services.

Social services structures continue to be based on age and impairment. Older people’s services are usually divided into teams, according to the size of area of a local authority. Policies, procedures and eligibility criteria may be the same within a local area, and are open to interpretation, often leaving older people who meet together and who live in different parts of a local authority area, bewildered and angry as to why they have been treated differently.

In terms of budgets, local authorities, and their social services departments, operate on an annual basis and budgets can be susceptible to change, particularly when national and local politics are involved.

Issues specifically related to costs and training

Disabled people who have a community care package and/or direct payments will be transferred to older people’s services when they reach 65 and this will lead to a review of what services they are receiving. This is the point at which the older person will usually have to justify and defend their package of care. The number of hours received as a disabled person under 65, may qualify the person for residential care as an older person as the cost ceiling is lower. For care managers, it is usually about providing minimum support for an older person to stay at home before the ‘inevitable’ move into an institution.

Other issues, that may be even more difficult for older people, is a change in the care management relationship, with the recognition that you are even more devalued than you were when classified a disabled person, and the sheer fear that removal to an institution may be imminent. Every area is in need of a knowledgeable personal assistance support scheme and advocacy service that provides services for people irrespective of age. Up until the age of 65 there is less likelihood of the disabled people entering institutions but after the age of 65 institutionalisation is far more likely to be a reality..

Social workers and care managers who have been working with younger disabled people before or since the Direct Payments legislation came into force, may have had more access to training and assisting disabled people to access Direct Payments. Care managers in older people’s teams may have had little or no Direct Payments training and therefore be bereft of knowledge that will assist older people to access Direct Payments. This adds to the discrimination faced by older people and denies them the opportunity to fulfil aspirations.

Research into direct payments for older people

Colin Barnes 1997 research into older people’s perceptions of direct payments and self-operated care schemes, indicated that older people required a greater degree of time to support a decision on the acceptance of a Direct Payment. Initial uncertainty did not necessarily mean that older people did not want a direct payment. There were blanket assumptions, mostly negative, around older people and dementia and this negativity persists.

1n 1998, Portsmouth Social Services Department set up an ‘as if’ scheme called the ‘Choice and Empowerment Pilot Scheme. It was designed to start a shift towards extending the philosophy of Independent Living to older people and it enabled older people to have a choice of who supported them. This was a pilot set up before the extension of direct payments to older people in order to gain an understanding of what the issues might be when the legislation was extended to include older people. The Department recruited the personal assistants (called ‘personal choice assistants’ (PCAs)), with input from older people. When recruitment had taken place, older people could choose from those recruited and the Department paid the personal assistants.

Benefits and concerns arising from the evaluation of this pilot scheme.

Care managers saw the scheme as something they themselves would want. The limitations were that the Personal Choice Assistants were employed by the local authority and independent agencies, and did not represent real choice because it was unlikely they would supply the hours required. Care managers regarded people living alone or who had dementia, illegible to join the scheme. They saw the scheme as something they had to do on top of their work load.

Older people who took up the option, liked the flexibility because they could bank hours and use them when required.

Two people from minority ethnic communities managed to get on the scheme, one being allowed to employ a relative because of the difficulty in recruiting a culturally supportive personal assistant.

Many other issues came from the research, but one final issue worth mentioning is that related to carers. In Portsmouth, care managers were to be found addressing carers groups, making them aware of the scheme. The report highlighted the way in which a carer often took control over who would assist the older person, the tasks to be undertaken and how they would be done, leaving the older person with less choice and control than before they came onto the scheme.

The issues are just as important when related to Direct Payments.

The Henwood Study of 1998 stated that older people wanted personal care that gave flexibility, continuity, reliability, competence and kindness. Traditional services have difficulty in meeting these requirements. The Portsmouth research also produced these findings.

It seems that it is more vital than ever that our organisations, managed and controlled by disabled people, that offer support to those who are considering Direct Payments or are already accessing them, keep that role. There is a real danger that older people will not get accessible information and positive advice about Direct Payments for a variety of reasons. While a few care managers will positively promote Direct Payments for older people, the majority think only of the barriers, that include ideas that Direct Payments are too risky for older people, and that they will not manage to recruit staff, sort out money and arrange quality care. We are aware of local authorities who, in order to increase the take up of Direct Payments by older people, are keen to encourage older people to buy their support from agencies rather than support them through the process of directly recruiting personal assistants. Before I move any further along this negative journey, I will conclude with the voices of older people who do manage Direct Payments and offer their positive comments:

“I acquired information on Direct Payments from the day centre I attended. It should be in the places we go to.”

“I need all information on tape and my friend needs large print. It’s no use us having a leaflet on Direct Payments.”

“I used to go into a residential home while my wife went off to visit relatives in Canada. They call where I went ‘respite care. Now I’m on Direct Payments my wife and I go on holiday and I take a personal assistant.”

“It’s hard when you need your own support and you have a partner to support as well. When things go badly, it’s like suffering twice. You suffer yourself because you can’t manage to do those things for your partner you once did and you suffer for them because they are uncomfortable or unhappy. The worst thing is when you start clock watching, ten o’clock, eleven o’clock and still no-one comes and no phone call. Direct Payments changed all that.

“I like meeting with other Direct Payments users as they give me encouragement and I can find out how they manage particular situations.”

“I’ve met many interesting people on Direct Payments and now I’m on Direct Payments, if I have a problem I can ring a friend and we can usually sort it out together.”

“I almost turned down direct payments because the paperwork seemed cumbersome and I was afraid I would get in a muddle. Now I’ve joined a payroll scheme I send all the paper work off to them. When the pay slips come to me, my friend writes the cheques and I sign them. He also fills in the paperwork.

“Sometimes, I have to skip having a bath in order to chase my dreams.”

Older People & Legislation on Assessment & Direct Payments

Summary of the legal provisions
by Ann Macfarlane MBE
March 2003

Direct payments legislation fits into the framework of a number of other pieces of legislation that support the needs of older people, particularly those that relate to assessment. It is information prior to assessment, and at the assessment stage that can determine a liberating outcome for older people. For this presentation I propose to keep input brief around the legislation but for those who would like it, I can provide additional information.

The NHS & Community Care (Direct Payments) Act came into force in 1996, with the extension to older people in February 2000. Up until that time, some local authorities offered and made third party arrangements for older people. Since February 2000, there was been an upsurge in other legislation related to older people. This legislation includes:

National Service Framework for Older People and focuses upon:

• Rooting out age discrimination
• Person-centred care with older people treated as individuals and with respect and dignity
• Promoting older people’s health and independence

Important factors to draw out of this legislation are those that relate indirectly and directly to direct payments are:

NHS Services: NHS services to be provided regardless of age, on the basis of clinical need alone

Social Care Services: Social care services will not use age in their eligibility criteria or policies, to restrict access to available services. In practice, commissioning strategies must be flexible enough to take account of individual needs and eligibility criteria for older people must not to be more stringent than for other groups. For some older people who require non-residential services, it may mean that they have to demonstrate higher needs to qualify for services compared with younger adults. Often, as research has demonstrated, what they often require as a preventative measure, is that ‘little bit of help.’ This leads on to understanding that sometimes a few hours provided at the right time can prevent hospital admission or prevent further hospital admissions. It may mean an older person is able to be discharged home. I am not advocating that older people should manage on a small number of hours, I am highlighting the fact that often older people cannot get any service and are therefore disadvantaged when their needs change. Therefore if they can, through the assessment process, acquire a few hours it may be possible to have these increased through the review process.

Ten years ago, for older people who did have relatively high needs, there was much debate around professional practitioners taking away the independence of older people by placing them in residential care, rather than undertaking a needs-led rather than a service defined assessment. Interestingly, this is still the situation today for many older people because practitioners are caught up with risk assessment rather than needs-led assessment.

Person-centred care: National Health Service and social care services commissioners and providers are charged with treating older people as individuals and are expected to assist them to make choices about their own care. This is to be achieved through the single assessment process, integrated commissioning arrangements and integrated provision of services, including community equipment and continence services. Older people will require appropriate and accessible information if they are to make choices and decisions that will make a difference to their quality of life, whether that is their health requirements, domestic, social, or personal care needs.

The 1999 Health Act focuses on:

Joint commissioning and pooled budgets with the emphasis on a lead commissioner who will provide an integrated approach to service provision rather than working to organisational boundaries. Section 31 of the Health Act details partnership arrangements. It is possible for money to be given by a Primary Care Trust to a local authority who can then translate this into a direct payment for the health care required by the older person. Where it is not possible for direct payments to be made in lieu of health care, the arrangements for the delivery of health care has to be compatible with the increased independence that direct payments are facilitating.

Again, under the Health Act, older people, with information, support and advocacy if or as required, should have input into their lives that is responsive to gender, personal appearance, communication, diet, race, culture, religious and spiritual beliefs! This is where a direct payment could really support this holistic approach and demonstrates the need, in training, to assist practitioners to cross the boundaries and break down barriers. In my role as a training consultant, experience shows that it is usually the statutory sector planners, commissioners and providers that put up the barriers. Training from their perspective, often focuses on an individual/medical model approach that makes it difficult for them to understand the needs of older people within a needs-led, Independent Living/rights based framework. It has been suggested in the Association of Directors of Social Services Older People’s Committee that more imaginative commissioning should include participation, life-long learning and leisure!

Critical issues arising from a needs-led/Independent Living/rights based approach are:

• the importance of agencies agreeing arrangements for assessments, whether single or separate assessments, placing the older person in the centre of the process, ensuring that the older person understands this process and what their rights are in determining outcomes. The older person also needs to know time scales around the assessment process, their right to question and complain, the review and monitoring processes.
• Information gathering and sharing between the different agencies, thus avoiding older people and those who support them having to provide the same information to different people.
• Recognition of greater prevalence of some illnesses among specific groups. Provision must be culturally appropriate and sensitive and serve the needs of those for whom their first language is not English. Direct payments can be helpful in providing the flexibility that personal assistants can offer when people have fluctuating impairments.

For older people, there is a recognition that

Intermediate care – delivered between primary care and specialist services is to prevent unnecessary hospital admission, support early discharge and reduce or delay need for long-term residential care, mostly aimed at older people.

Fair Access to Care, implemented in April 2002, provides a national framework for councils to use when determining their eligibility criteria for supporting adults of any age. They will be expected to adopt a consistent approach to defining priorities for meeting needs in order to promote independence and quality of life. This includes a common understanding of risk assessment and the focus for reviews. Fair Access to Care also focuses on rooting out age discrimination and levelling costs up for older people rather than down. However, this aspect will require careful evaluation and monitoring. .

Other Acts to be aware of include:

Supporting People

This Act separates care arrangements from the variety of housing situations in which many disabled people and older people live. In practice this is difficult to achieve as housing providers are tied into a process of care that is purchased by block contract. This is often much the same kind of support that has traditionally been provided in ‘sheltered’ housing. In theory the legislation suggests that people can be supported with flexible care arrangements and assist people to move between different housing environments and between different areas in the country.

2002 The Human Rights Act

The Human Rights Act sets out rights in principle and has many issues for older people, including privacy and communication.

2003 Valuing People

Valuing People sets out Government plans for people with learning difficulties. There is much work to be done that supports older people with learning difficulties, many of whom have unfulfilled aspirations and many who are yet to move out of institutions and will do so by 2004. Aims include developing supported living approaches and modernising day services. One small achievement would be to free up the money spent on day centres for older people and transfer the money into Direct Payments with support, where appropriate, to assist older people with making wider community choices.

2004 The Health & Social Care Act

This Act identifies gaps between various stakeholders, health provider agencies, social services and older people and how they conceptualise Independent Living. There is a focus on identifying practical barriers, finance, organisational and political barriers, to adopt a consistent approach to develop and promote independent living in line with departmental policies. There is a need for the stakeholders to ring fence money in order to achieve targets and goals. As has been identified, very few health commissioners and providers have an understanding of Independent Living from a user perspective. Their focus for disabled people is on rehabilitation rather than advocacy, social inclusion and Direct Payments. Few Primary Care Trusts, have partnership arrangements with the voluntary sector and local authority departments, such as housing and education. Primary Care Trusts, pivotal to much of this joint working, have done little work around older people and Direct Payments. They must include older people and user groups, particularly as there are few parallel groups to those of organisations of disabled people. A related issue is that of Independent Living and older people. Research shows that independent living stems from the Disabled Peoples’ Movement and is unlikely to be found on the agendas of older peoples’ groups that have come a very different route.

Structures in the Statutory Sectors

In the National Health Service, many of the structures and practical issues focus on health, usually ill health. This leaves little room for debate in terms of Independent Living and Direct Payments. The challenge of understanding and delivering Social Model services lies with health workers. Added to this is the fact that there has been little or no involvement or participation of older people in determining health services.

Social services structures continue to be based on age and impairment. Older people’s services are usually divided into teams, according to the size of area of a local authority. Policies, procedures and eligibility criteria may be the same within a local area, and are open to interpretation, often leaving older people who meet together and who live in different parts of a local authority area, bewildered and angry as to why they have been treated differently.

In terms of budgets, local authorities, and their social services departments, operate on an annual basis and budgets can be susceptible to change, particularly when national and local politics are involved.

Issues specifically related to costs and training

Disabled people who have a community care package and/or direct payments will be transferred to older people’s services when they reach 65 and this will lead to a review of what services they are receiving. This is the point at which the older person will usually have to justify and defend their package of care. The number of hours received as a disabled person under 65, may qualify the person for residential care as an older person as the cost ceiling is lower. For care managers, it is usually about providing minimum support for an older person to stay at home before the ‘inevitable’ move into an institution.

Other issues, that may be even more difficult for older people, is a change in the care management relationship, with the recognition that you are even more devalued than you were when classified a disabled person, and the sheer fear that removal to an institution may be imminent. Every area is in need of a knowledgeable personal assistance support scheme and advocacy service that provides services for people irrespective of age. Up until the age of 65 there is less likelihood of the disabled people entering institutions but after the age of 65 institutionalisation is far more likely to be a reality..

Social workers and care managers who have been working with younger disabled people before or since the Direct Payments legislation came into force, may have had more access to training and assisting disabled people to access Direct Payments. Care managers in older people’s teams may have had little or no Direct Payments training and therefore be bereft of knowledge that will assist older people to access Direct Payments. This