Submission 2005

Submission to the National Economic and Social Forum NESF Project Team:
Care for Older People

February 2005

Introduction

Comhairle welcomes the opportunity to contribute to the NESF deliberations on care for older people. This submission is drawn up in the light of the NESF intention to “focus on the steps that are necessary to ensure that anyone who wants to stay in a community setting in old age is able to do so”. We also note that the project does not propose to address the role of carers or the funding of long term care. Comhairle has already published a report on carers (Supporting Carers - A Social Policy Report, July 2002), which outlines the problems faced by carers and includes a number of recommendations for improvements.

The primary function of Comhairle is the provision of information, advice and advocacy in the broad area of the social services. Comhairle also has a number of other functions including:

“To support, promote and develop the provision of information on the effectiveness of current social policy and services and to highlight issues which are of concern to users of those services”

In carrying out this function, Comhairle relies heavily on feedback, based on social policy reports, on the needs and experiences of users of the Citizens Information Centres (CICs) and Citizens Information Phone Service (CIPS). CICs and CIPS report queries with a social policy dimension to Comhairle where they are analysed and used as the basis for policy submissions and reports. During 2004, the CICs registered 648,484 queries and the CIPS 72,975. Of these 721,459 queries, 1,649 were deemed by CICs and CIPS to have social policy implications and were reported to Comhairle in separate social policy records. In CIC Survey 2003, the four largest categories of queries were issues relating to Social Welfare (30% of all queries), Employment (13%), Health Services (9%) and Health Board Payments (7%).

Many of the issues which are brought to the attention of Comhairle through the information services are faced by all age groups. Comhairle does not compile information on the age of people using the information services but it is possible to distinguish and recognise particular problems faced by older people. This submission outlines the sort of issues which arise for users of the information services in their dealings with the broad health, community care, housing and personal social services. The main issues are as follows:

• The need to implement the stated policy on community care
• The need to integrate hospital and community care services and to regard housing as an essential element of community care
• The difficulties in getting information about services and ensuring that entitlements are accessed
• The absence of a clear legislative entitlement to many core services
• The shortage of home helps and occupational therapists
• Difficulties which arise in relation to decision making on behalf of older people who have lost their decision making capacity

Implementation of Policies

In its submission to the Health Strategy Review 2001, Comhairle drew attention to a number of issues, which are also relevant to this submission. The Health Strategy submission outlined, among other things,

• the need to implement commitments set out in policy documents and
• the lack of legislative clarity about entitlement to health and personal social services.

Some of the commitments in the 1994 Health Strategy in relation to older people have not been implemented. There is a need to implement the following,

• the drawing up of national guidelines and legislation to deal with community care services;
• the publication of a charter of rights in relation to older people

Specific commitments in relation to services for older people in the 2001 Health Strategy have not been implemented. Of particular relevance to this submission is the need to publish the proposed co-ordinated action plan to meet the needs of ageing and older people. Commitments in relation to clarifying entitlements to community care services and an integrated approach to care planning for individuals also need to be implemented. The organisation and provision of comprehensive care packages for older people in need of services would address many of the difficulties, which they currently experience in dealing with the community care services.

Policy on Community Care

There seems to be virtually total consensus that the policy of promoting care at home is the correct policy and it is clear from research that older people want to continue living at home. However, there is a significant gap between the stated policy and its implementation. There are major gaps in the community care services required to facilitate people to live at home when they need assistance to do so.

The policy of promoting care at home requires that the supports available for home living are at least as great as those available for institutional living. This is not always the case. For example, an older person who qualifies for a private nursing home subvention should be able to avail of that subvention in order to live at home. The tax relief that is available to the person who pays the nursing home fees should also be available if nursing care or other domestic care is contracted at home. There is tax relief available for the employment of a person to care for an incapacitated family member but it is only available for regular employment. Contracted services are likely to be more suitable and more available for many people but tax relief cannot be claimed on such expenditure. Comhairle has argued in many submissions that direct payments are preferable to tax relief for the provision of social services but, if tax relief is available, it should support home living at least as much as it supports institutional care.

Integration of services

Comhairle welcomes the provisions in the Health Act 2004, which require the Health Service Executive to integrate the delivery of health and personal social services. Citizens Information Centres frequently report cases of people coming home from hospital without arrangements being made for the services they need to enable them to fully recover at home and then to support their living at home. Integration of services does not only mean that the hospital authorities should inform the community care services that a person is being discharged. Both must be involved in assessing the need for services before the person is discharged. This assessment should be carried out while the person is in hospital or while attending a day hospital service.

Pilot initiatives such as Home First, a new structured service developed by the Eastern Regional Health Authority, the Northern Area Health Board and Beaumont Hospital in North County Dublin will enable older people clinically discharged from hospital to be supported in their own homes. The Home Support Service will be provided by RehabCare and Community Care Area 8, Northern Area Health Board.
This project, significantly moves the planning and delivery of care from a service-driven approach to a needs-led programme of care and is one of six pilot projects, which have been initiated by the ERHA, to establish how health and personal social services for older people can most effectively be developed and delivered to meet their specific needs. Similar projects need to be developed, evaluated and supported across the country.
Older people should not have to travel to community care headquarters to get services if they are already using hospital or day hospital services. A further example of the lack of co-ordination and integration is that transport may be provided to day hospital services but there are no provisions for a transport service for the same person to attend the community care offices.

Assessment of Need

At present, there is no comprehensive assessment of need for community care services. The only assessment of need, which is carried out for older people is in relation to admission either to a public long stay place or in connection with the nursing home subvention. In theory, this assessment could conclude that the most appropriate care is to be provided in the person's home but this does not seem to happen and, if it did, there is no provision for providing the required supports. There is virtually no information publicly available on how the assessment for a public long stay place is carried out. It is not clear whether the assessment involves medical considerations only or whether social factors are also taken into account. Again, there is no formal arrangement for the provision of appropriate support if long stay care is refused or is unavailable.

A comprehensive assessment of need should be carried out before an older person is discharged from hospital or when a person applies for a community care service. Older people may not apply for services because they do not know about them. The assessment of need should identify the necessary services – the older person is entitled to refuse the services but they should do this with the knowledge of availability of services. The assessment should include housing need as well as medical and social needs. The involvement of local authorities will be necessary to achieve this. The proposed provision of assessment of need services under the Disability Bill 2004 will not apply to all older people as many would not meet the definition of disability in the Bill.

Housing services

In order to facilitate older people to continue living at home, housing policy has to be co-ordinated with policies on health and personal social services. At present, both the local authorities and the health authorities provide some help with housing repairs but neither provides help as of right and adequate resources are not provided for these services.

The problems with the Disabled Person's Grant scheme are well documented. CICs receive regular complaints about this scheme. These mainly concern delays in getting an assessment for the scheme, further delays in the processing of applications and inadequate funding being available. In 2003, Comhairle and the National Disability Authority made a joint submission to the Department of the Environment, Heritage and Local Government Review of the scheme. The recommendations in this submission asked that:

• A formal, national policy for the administration of the grants should be introduced, including a requirement that grants are applied consistently across local authorities, so as to remove any geographical disadvantage.
• Local authorities should be required to make decisions within a fixed time limit
• There should be an independent appeals system

In the longer term, the submission argued that the development of an Independent Living Fund, which amalgamates existing house improvement grants, should be explored.

The Essential Repairs Grant scheme is operated specifically for older people. However, it no longer covers the updating of central heating systems and some local authorities do not regard replacement of windows as an essential repair. This means that many older people can get no help towards the cost of repairs.

CICs have received many complaints about the operation of the security grants scheme. Comhairle is compiling a social policy report on this scheme at present. The scheme is effectively not available everywhere because there is no voluntary community group operating it. The security systems available are quite restricted and do not necessarily meet the needs of the individual older person.

The housing grants schemes and the security scheme should all be run in co-ordination with the community care services.

Entitlement to services

At present, there is no clear legislative entitlement to services such as home helps. Comhairle has already argued that community care services such as these should be treated as core services and there should be a clear legislative entitlement. While this in itself would not guarantee that the services would be provided it would mean that the provision of services would be more likely and people who were refused services would be able to challenge the decision.

In order to achieve the aim of continuing to live at home, older people need an adequate income. Comhairle welcomes the increase of €12 per week in Social Welfare payments for people aged 66 and over in Budget 2005. Older people need to access all their entitlements and the process of getting those entitlements should be easier. In a number of previous submissions to government, Comhairle has recommended that all recipients of retirement pension and old age pensions should be automatically assessed for entitlement to this package. All the information relevant to a person's eligibility could be collected at the same time thus avoiding multiple applications. It is also recommended that older people should not have to reapply for the Household Benefits Package when they move home.

Information

Information plays a vital part in enabling people to gain access to services and the Department of Health and Children and the Health Service Executive need to provide good quality, accessible information on health and community services. Information on rights and entitlements and priorities in access to services is required. The quality of this sort of information provision has varied from one health board to another but virtually no health board provided comprehensive information. Comhairle's social policy report on Medical Cards (2004) outlined the lack of information provided by health boards in relation to how discretion is exercised. The same problems apply to community care services. Without adequate information, it is impossible for people to access their entitlements or to complain if they fail to receive them

Citizen involvement

There is, at present, very little formal citizen involvement in the planning and delivery of services. The opportunity for such involvement is now available through the consultative forums, which are provided for in the Health Act 2004. Older people should have specific representation on these forums and the HSE should help older peoples' organisations to develop skills and resources to enable them to adequately represent the interests of older people.

Complaints

Reports and submissions compiled by Comhairle frequently refer to the absence of an independent complaints and appeals system within the health services. The Health Act 2004 does provide for an independent complaints system. The HSE should put in place arrangements for the implementation of the complaints system as soon as possible.

Free travel

The free travel scheme enables some older people to live a more active life than would otherwise be possible. However, there is a significant number who are entitled to the scheme but for whom it is of limited use because of the lack of public transport. It is important that initiatives such as the Rural Transport Initiative be retained and expanded in order to facilitate those who cannot currently make use of their entitlements. Other improvements could be made in the scheme – for example, some CIC clients have had difficulty in getting a Companion Pass when this was necessary to facilitate an older person to use the scheme. A married person automatically receives a pass for the spouse but single people do not.

Shortage of Key Personnel

There is no clear entitlement to a home help service and the availability of the service varies considerably throughout the country. It is the experience of CICs that older people are rarely told they do not qualify for a home help service. They are usually told that a service is not available either because the money is not available to pay for it or there are no people available to provide it. Some health boards have given a greater priority than others to the provision of a home help service. Comhairle recognises that when the HSE service plans are agreed and implemented, there is likely to be a standard service available throughout the country. However, we are also concerned that this may well result in the loss of services in certain areas as well as improvements in others. It is important that the HSE service plans give priority to services such as home helps to promote the stated policy of promoting home care.

There may also be a need to re examine the role of home helps. Older people may need personal services which home helps are precluded from providing. Again, the precise needs of the individual must be taken into account.

There are also shortages of other essential service providers. For example, a CIC was told that there was a four year waiting list for Occupational Therapy in a particular health board area. There are problems of lack of co-ordination between occupational therapy services in hospitals and community services. For example, a person who is using day hospital services should be able to avail of the OT services there and not have to travel to the Local Health Office (the new name for the community care area headquarters) in order to be assessed for aids and appliances such as wheelchairs. This assessment should be carried out in the day hospital.

Substitute Decision making arrangements

Older people who gradually lose their decision making ability because of the onset of Alzheimer's disease or other forms of dementia are probably the most dependent group and they are particularly vulnerable. Unless the people concerned have arranged an enduring power of attorney, there is no system whereby an appropriate substitute decision maker can be appointed. The ward of court system is not suited to older people. This means that family members or carers have to make decisions for which they have no legal backing. It also means that the older person may be vulnerable to exploitation and have no remedy for financial or other abuse.

The Law Reform Commission has addressed the issues in this area and the proposed arrangements for guardianship with proper supervision should be implemented in order to protect vulnerable older people and enable their families and carers to make the necessary decisions.

The perception of older people

While the NESF report will inevitably be concerned with older people who need care, it is important to set out clearly that the majority do not need care. The fact that people are living longer and enjoying better health while so doing is a triumph and an opportunity.

The health costs of caring for older people are not necessarily increasing as people live longer. The use of expressions such as “pension time bomb” gives rise to a view of older people as dependent and parasitic and this should be firmly rebutted.

The project team should therefore promote a positive healthy aging approach linked to health promotion strategies throughout the life cycle.