Social support systems
Organisation and financing of social support to people with dementia and carers
Background information on the social/healthcare system in Ireland
The Government’s 2001 “Health Strategy: Quality and Fairness: A Health System for You” broadly accepted “The Action Plan for Dementia” (O’Shea & O’Reilly, 1999) and committed to its implementation over a seven-year period. Today, despite some improvements, many of its recommendations have yet to be implemented. The Alzheimer Society of Ireland (ASI) is currently lobbying government with their Dementia Manifesto which is supported by research entitled ‘Implementing Policy for Dementia Care in Ireland’. They are calling for dementia to be made a National Health Priority and for the full and accelerated implementation of the Action Plan.
The organisation of social support for people with dementia and carers
The Health Services Executive (HSE) is the state body organised regionally that is charged with providing Public Health Services in the Community or ‘Community Care Services’ under various Health Acts. These services may also be provided by voluntary NGOs in conjunction with or on behalf of the HSE. Community care services may include public health nursing, home help services, day care and respite care, physiotherapy, occupational therapy and chiropody. The HSE is also responsible for managing Nursing Home Subvention payments. The HSE also provide ‘Home Care Packages’, they are made available according to service availability in an area and the aim is to assist older people living at home. Extra funding for these packages was made available in 2006 and 2007. However, the HSE is still working on standardising the approach to this service on a nationwide basis and so availability and level of service differs around the country.
Medical cards are given to those over 70 or who pass a means test. Medical card holders are generally automatically entitled to these services free of charge. Non medical card holders may also be entitled to services depending on their individual circumstances. Entitlement to community care services is not clear cut and there is a wide variation in the level of services available in different parts of the country resulting in huge variations and inequalities in service provision. The rules about which community care service must be provided differ in accordance with the differing services. In some cases the HSE is obliged to provide a service and in others they are not, one of the reasons for this is that the health services provided by the HSE reflects the specific population in the area.
One of the unique elements of the Irish social care provision system is the role played by NGOs - in many cases it is the NGO who is the main provider of the service with financial support from the state.
When care in the community is no longer possible, the person may enter long term residential care – again there are a number of ways in which state support is provided to the person and his/her family as well as a number of different service providers operating in this area. The latter includes direct provision by the state, provision by the NGO sector but with financial support from the state and private provision. The system is extremely complex and again there are major geographical inequities in the provisions by the state.
The Department of Social and Family Affairs is responsible for the issuing of financial supports. There are a range of supports that can be made available. In general a person must pass a means test or income assessment or have paid enough Pay Related Social Insurance (PRSI) to avail of these supports. Some of these supports include Carers Allowance, Carers Benefit, Respite Care Grant, Pre-Retirement Allowance, Household Benefit Allowance, Living Alone Allowance.
The Department of Community, Rural and Gaeltacht Affairs operates Community Support for Older People in the form of grants which can be used to improve social support and security for older people in their own homes by providing grants for security locks on doors and windows, security lighting, smoke alarms etc. In addition, people may apply to their local authority when looking for support with accommodation or housing and for grants to help them make home adaptations to suit their needs due to an illness or accident.
The Department of Health & Children, Minister for Health and Minister of State with special responsibilities for Older People are responsible for the social support of people with dementia. The Department of Social and Family Affairs, and Minister for Social and Family Affairs as well as the Department of Community, Rural and Gaeltacht Affairs and the Minister for Community Rural and Gaeltacht Affairs, also influence services and support for people with dementia.
The Department of Health through the Health Services Executive (HSE) provides health services such as Home Care Packages and other HSE services such as Nursing Home Subvention. The Department of Social Welfare operates payments such as the Carers Allowance and Pensions. The Department of Community, Rural and Gaeltacht Affairs is the department responsible for areas such as rural transport initiatives, alarms for the elderly and they have a number funding opportunities for regional health related projects which NGO’s etc can apply for. They also manage Lottery grants.
The HSE provides funding to ASI to provided Home Care and Day Care supports to people with dementia, their family and carers. In addition, The Citizens Information Board, formally Comhairle, provided funding to the Alzheimer Society of Ireland to set up the Advocacy Pilot Project in North Dublin.
The overall funding of social support for people with dementia and carers
State support and services are funded through general taxation and a 2% health levy which working people automatically pay. Many services are means tested and this restricts availability to families who do not meet the means test criteria. People aged 70 and over are entitled to a medical card which gives automatic access to health care services without a means test.
The Health Service Executive provides funding to ASI to provide dementia specific day care centres and home care services. Currently the funding does not meet the full cost of these services and ASI fundraises to meet the balance.
Other Departments also have funding streams available for research or specific projects which can be applied to by self-help organisations. For many of these projects, the funding will meet a percentage of the cost and the organisation must raise the balance to meet the full cost.
The legal framework surrounding the provision of social support
The key Acts influencing care for people with dementia in Ireland are:
- The Social Welfare Consolidation Act 2005,
- The Social Welfare Act 2006.
- Health Acts – 1947 to 2004 (these outline the legislative framework for Health and personal social services)
- Health (Nursing Homes) (Amendment) Act, 2007
- The Disability Act 2006 (this creates the legislative framework for a needs assessment to be carried out on the person with the disability)
The legislative approach to social service provision for older people with a disability has been one of ‘enabling’ the institutions of the state to provide care rather than placing an ‘obligation’ on them. There is very little emphasis in the Irish legislation on a ‘rights based approach’ to service provision.
The Department of Health and Children published draft National Standards for Residential Care Settings for Older People in 2007. The interim Health Information and Quality Authority currently has two working groups devising standards, The National Quality Standards for Residential Care Settings for Older People and Dementia Specific Standards for Specialist Care Units/Alzheimer Units. The aim of the groups is to finalise the Standards in 2007.
The Government is currently drafting legislation to deal with capacity issues in vulnerable adults. The proposed legislation will impact directly on people with dementia in that it is moving away from the adversarial approach towards a guardianship approach along with outlining clear rules regarding when a person has competence. This new legislation will positively impact on the lives of people with dementia and their families.
The suitability of social support for people with dementia and carers
Adequacy and accessibility in general
While there have been improvements in the provision of care, much remains to be done. Many of the key recommendations outlined in the Action Plan for Dementia (1999) have yet to be implemented.
Some improvements have been made in enhanced training and education for staff, increased at-home respite care, additional specialised dementia units and more old age psychiatry consultants. However, progress has been slow on implementing the Action Plan for Dementia. The ASI is calling for dementia to be made a National Health Priority as they do not feel that the available services respond adequately to the specific needs of people with dementia.
Current diagnostic and assessment services are wholly inadequate. Therefore, by the time a diagnosis is confirmed, the person’s dementia has significantly progressed and early intervention strategies missed. There is a lack of services for people in the early stages of their dementia.
As already indicated, there are many regional and geographic variations in service provision and access to services in many cases solely relate to where you live and are not at all based on the person’s needs. This is true of both direct state service provision and NGO provision.
Those people who have access to services experience many limitations to the services – there is very little flexibility and more often than not, they are not comprehensive in meeting the person’s needs. Twilight, evening and weekend services in terms of home care and day care are totally inadequate. Dementia specific training for those working in the caring field is often lacking. As a result, there is often premature admission to acute or long term care, which in turn places huge unnecessary burden on these health care systems.
A research paper “Perceptions of Stigma in Dementia, An Exploratory Study” outlines key recommendations for policy, service planning and information provision/education. One of the main recommendations of this research is that greater levels of resources are needed to augment the availability, accessibility and usefulness of person-centred dementia specific services that support the abilities of people with dementia. The appointment of core community based case managers throughout the country is highlighted as a priority for service planning and provision.
The reports mentioned are available on www.alzheimer.ie
People from ethnic minorities
There is no specific support available for people with dementia and their carers from ethnic minorities.
Younger people with dementia
The ASI has highlighted a range of areas where services are inadequate or inaccessible. A recent report on younger people with dementia found that the impact of age restrictions on many services for people with dementia and the complete lack of services dedicated to the specific needs of younger people with dementia are a serious concern.
Services and support for people with dementia and their carers
Types of care
Day care is available but is not sufficient. More dementia specific day care centres are needed as well as better transport to access the service. The Alzheimer’s Society of Ireland (ASI) does provide some dementia-specific day care centres. Day care is funded partly by the state and partly by service users. There is a need to increase links with home care services to prepare people better for day care.
Respite care is available but this is not sufficient. Waiting lists occur and there are geographic disparities related to funding and to the recruitment of carers. Respite care is partly funded by the state and partly by service users. NGOs provide separate in-house respite which is part funded by the state.
1-2 weeks per year residential respite is provided for most people with dementia and this is completely funded by the state. ASI provides one respite centre nationwide which is partly funded by the State and partly through service users and other forms of fundraising.
Long term respite care is provided at a sufficient level. It is partly funded by the state and partly by service users.
Long-term residential care
In Ireland there is a mix of public and private long-term residential care. There are adequate levels of private services but inadequate levels of public services and a need for more dementia specific options. Full-time long term residential care is financed by the State. Means testing is applied and personal property included in the calculation of available means. There are no out-of-pocket payments.
End of life services are rarely provided for or planned for people with dementia. The current palliative care model operated in Ireland does not actively include people with dementia.
Monitoring in the home via alarm systems
Tele-care systems are available and are generally sufficient.
Personal assistance and home help
Fully state-funded support is available for:
- Personal Hygiene
- Assistance taking medication
- Skin care
- Assistive devices
Partly state-funded support is available for
- Assistance eating and drinking
- Assistance with mobility
- Social activities
- Home adaptation
None of the services are provided at a level that the Alzheimer’s Society of Ireland (ASI) considers to be sufficient. Services which provide support such as help with personal hygiene and incontinence are provided through public health or registered nurses and these services are thus limited. Occupational therapy services which would help with skin care and home adaptation are poorly resourced and staffed. The ASI provides some home care services and day care which begin to address the lack of support for people with dementia particularly addressing social needs. Assistive devices are available for those with a medical card but availability is limited.
Again some services are fully state-funded while others are part funded by the state and part by service users.
Fully funded services include:
- Assistance with housework
- Laundry services
Partly funded services include:
- Meals on wheels
- Assistance with shopping
None of these services are provided at a level that the Alzheimer’s Society of Ireland considers to be sufficient.
Psychosocial support and training for people with dementia and carers
Information on support and services is provided by the government in Ireland but this tends to be done by different agencies. There is no one-stop-shop for service users and people with dementia to get information and advice. The ASI provides a Helpline and information services which is funded by fundraising.
There are no formal counselling services for people with dementia or their carers although ASI provides opportunities for peer-support. An annual respite care grant is available for carers to enable them to take a break but there are no services offering holidays for people with dementia. There is no training provided for carers of people with dementia by the state but ASI and other NGOs may provide some training.
Work/tax related support for people with dementia
A person who is deemed unfit to work and has met the required PRSI (Pay Related Social Insurance) conditions and is under age 66, may claim for Illness Benefit.
The Invalidity Pension is a long term, PRSI contribution based payment for people over 60. They must satisfy both medical and social insurance conditions and be deemed permanently incapable of work because of illness or incapacity.
A Disability Allowance is available to people who do not meet the PRSI conditions, are under 66 years of age and have an injury, illness or disease which causes them to be ‘substantially restricted’ in doing work. A person must pass a means test to qualify.
This is covered by The Social Welfare Consolidation Act 2005 and The Social Welfare Act 2006.
Direct payments or the equivalent are available in some cases. The Health Services Executive (HSE) will provide money to a person to buy in home help or home care where this is not available directly through the HSE. There are maximum limits and qualifying conditions attached.
There are a number of other ways for a person with dementia to get assistance with home adaptations. This depends on whether the person is an owner occupier or living in social housing. For owner occupiers there are schemes available to meet up to 90% of the cost of the adaptations. For people in social housing the total cost will be met up to a maximum of €20,320. Everyone must apply to their local authority and an Occupational Therapist must then assess the individual situation. The rules for this assistance can change depending on where a person lives and the local authority that is applicable to that person. Due to a large number of applications currently some local authorities have suspended the scheme.
People over 70 automatically qualify for a free travel pass and for the household benefit package which includes a television licence as well as electricity, gas and telephone allowances. There is also a separate fuel scheme.
If a person is under 70, then there are restrictions, mostly means testing which apply to these benefits. If a person qualifies for Disability Allowance or Invalidity Pension then they will get a Free Travel Pass. They may also qualify for the Household Benefit Package if they meet certain other conditions, for example living alone. This is covered by the Social Welfare Consolidation Act 2005 and The Social Welfare Act 2006.
Work/tax related support for carers and carer allowances
An employed person taking care of an incapacitated individual is entitled to an allowance known as IT47. This is an allowance that can be claimed if a person, his/her spouse or a relative is incapacitated for a tax year by reason of physical or mental infirmity and they employ a person to take care of the incapacitated individual. This is covered by The Taxes Consolidation Act 1997 and subsequent Annual Finance Acts.
Carers are not entitled to paid time off work for caring but can take unpaid time off. They can leave work on an unpaid basis for a minimum of 13 weeks and a maximum of 104 weeks to look after someone in need of fulltime care. They will not be paid but their job must be kept open while they are on this leave.
People who have paid enough PRSI contributions may be able to apply for Carers Benefit which is a payment for those caring full time which is available for 2 years. This is covered by the Carer’s Leave Act 2001. If people are on Carer’s Leave and/or in receipt of Carers Benefit, then while they are on this leave or in receipt of this payment they will be credited with PRSI contributions (for a maximum period of 2 years), which protects their future social welfare payments such as the state pension (contributory). Other tax benefits available to carers include: Home Carers Tax Credit, Claim for Dependent Relative Tax Credit, Health Expenses and Medical Expenses Relief. These are covered by the following laws: The Carer’s Leave Act 2001, The Social Welfare Consolidation Act 2005 and The Social Welfare Act 2006.
Unless otherwise stated, information provided by Samantha Taylor (Alzheimer Association of Ireland) between April and August 2007.
Last Updated: mercredi 15 juillet 2009