Social support systems
Organisation and financing of social support to people with dementia and carers
Background information on the social/healthcare system in Lithuania
In the late 18th century, Lithuania became part of the Russian Empire. After the First World War, it became an independent state but was absorbed into the USSR after the Second World War. Between 1918 and 1940, Lithuania began to develop a health care system based on the Bismarck model. However, after the country’s absorption into the USSR, health care was reorganised according to the Semashko system. In March 1990, Lithuania declared its independence from the USSR and undertook a series of reforms of the health care system (Cerniauskas, G. and Murauskiene, L. 2000). Nowadays, the Ministry of Health is responsible for the general supervision of the entire health care system but social care is the responsibility of the Ministry of Social Security and Labour. In the last few years, new legislation has been passed on the integration of disabled people and on the provision of social services.
The organisation of social support for people with dementia and carers
The Ministry of Social Security and Labour is responsible for drawing up and implementing state social services programmes and projects. County governors implement the state social services policy in their respective counties. Municipalities are in charge of ensuring the provision of social services to their residents by planning and organising social services and controlling the quality of social services of general interest and social attendance. They are also responsible for carrying out needs assessments, determining people’s ability to pay for services and making the appropriate charges. Finally, there is a Social Services Monitoring Department which assesses, monitors and controls the quality of social services. There is some degree of overlap between the health care and the social welfare sectors and a considerable need for coordination with regard to decisions and processes.
Public authorities can contract any type of service provider. However, it is fairly common for the public authorities to fund the services that they themselves provide (rather than those provided by others, even in preference to county-owned facilities). Consequently, private facilities are often limited to addressing the needs of families that are able to pay significant amounts for the services they offer. Voluntary associations/NGOs tend to play a minor role in the provision of services due to their limited capacity and experience.
There are two main kinds of social support: social services of general interest and special social services. Social services of general interest include: information, counselling, mediation and representation, social and cultural services, organisation of transportation, organisation of catering, provision of necessary clothes and footwear as well as other services. Special social services are granted in cases where the general services are insufficient. They include social attendance (complex assistance not requiring permanent attendance by specialists including assistance at home and temporary lodging) and social care (day care, short-term care and long-term care).
Municipalities may in specific cases decide to replace the above mentioned services by “money for care” (cash payments). This is the most common form of social support. In addition, people with limited financial resources may also benefit from social insurance sick leave benefits, as well as disability and old-age pensions. The main recipients of social services are disabled adults, severely disabled adults and elderly people.
The State supports patients’ organisations through the tendering of projects proposed by NGOs. Such procedures are handled by the Disabled Affairs Department under the Ministry of Social Security and Labour and by the Ministry of Health. Unfortunately, support is often provided on an annual basis and linked to the budgetary cycle of the ministries which leads to a lack of sustainability. Furthermore, only limited resources are available and these are linked to specific activities. Funds are not granted for permanent staff wages. Umbrella organisations have tended to receive such funding in the past but small organisations also compete for the same funds. There are no accurate estimations as to the final allocation of such funds.
The overall funding of social support for people with dementia and carers
Social services are funded through general taxation and in many cases there are co-payments.
Some social services are financed through the municipal budget whereas for the provision of social care for severely disabled people, there are special targeted subsidies from the State budget. The municipality decides on the co-payment for social services by carrying out an assessment of income (for social attendance) or a means assessment including income and property (in the case of long-term social care). In some cases, percentages (e.g. 20%, 50% or 80%) of income are set as minimum limits and maximum ceilings for co-payments but 100% payments are possible in some cases.
Cash benefits are mostly funded through the state social insurance scheme. Certain allowances (mostly related to poverty) are paid through general taxation. The obligatory health insurance fund is a source of reimbursement for certain costs (e.g. linked to incontinence). Moreover, the services of a social worker, who is also a member of a community mental health care team, are included in the primary care capitation fee calculation.
The Decree of the Minister of Social Security and Labour and the Minister of Health, which came into force on 01.07.2005, approved the rules for the reimbursement of the costs of special permanent care and attendance, vehicle acquisition and adjustment and transportation. Children, disabled adults and elderly dependent people may be entitled to such reimbursements. The amendment of this decree, which came into force on 1 January 2007, included dementia. A score of 0-10 on the Mini-Mental State Examination (MMSE) was taken as an indicator for special permanent care and an MMSE score of 11-20 as an indicator for special permanent attendance (assistance).
The legal framework surrounding the provision of social support
The Ministry of Social Security and Labour elaborated and recently adopted a long list of legal documents in the field of social support. However, the actual implementation of the new approaches is of increasing concern.
The suitability of social support for people with dementia and carers
Adequacy and accessibility in general
The adequacy and accessibility of services for disabled people (including people with severe dementia), elderly sick people, other people with diagnosed diseases and (minimally) carers is limited. People living in rural and deprived areas have difficulties accessing adequate services. One of the reasons for this is that local budgets are somewhat limited and this is the main source of funding for social services.
In short, care is predominantly targeted at disabled people and social support is mostly linked to the incapacity to work. Therefore, assistance targeted at people with certain diagnoses is practically inexistent. The only exception to this is severe dementia which last year was officially recognised by general practitioners as a special need.
On the other hand, the level of support to be provided is established through the needs assessment procedure. So the actual support given to people with dementia at local level could significantly vary from one municipality to the next (depending on local resources, professional capacity, infrastructure, political priorities and attitudes).
People living in rural areas
As stated above, people with dementia and carers living in rural areas often have difficulty accessing adequate services.
People from ethnic minorities
There is no social support or services specifically targeted at people with dementia and their carers from ethnic minorities.
Services and support for people with dementia and their carers
Types of care
There are day care centres in Lithuania but with regard to mental health, the day care centres are mostly targeted at providing care for children. NGOs have played an important role in initiating and establishing a network of day care centres for mentally disabled children. According to official statistics, 1,700 volunteers worked in day care centres in 2006.
Day care centres with activities for adults (including those with dementia) are being piloted. For example, such a centre was recently created in Vilnius with financial support from the European Social Fund. According to official statistics, 14,400 elderly people attended day-care centres for the elderly in 2006. 6,000 disabled adults (of which almost 50 percent were of retirement age) received care in the relevant day-care centres. Day care is partly funded by the State. Funding from public sources is supplemented by co-payments (the amount of which is calculated on the basis of an income assessment).
Respite care in the home exists but there is insufficient information about it. The regulatory framework for short-term residential respite care has been established but there is no information available as to the actual availability of this service.
Long-term residential care
Long-term residential respite care exists. It is partly funded by the State/municipal budgets and partly by service users. Means testing is applied which covers both income and assets. Up to 80% of a person’s income can be taken into account. Property may be included when the person’s income is insufficient (European Commission, 2006). This service is considered insufficient. At the beginning of 2007, there were 520 people with dementia out of 5,302 residents and a further 455 people on the waiting lists for social care facilities for the mentally disabled. This situation must be considered in the context of a lack of alternative support.
Palliative care at home is not available. However, health care institutions intend to introduce such a service. The prices and rules for payment for palliative care services to be covered by the Statutory Health Insurance Fund should soon be adopted. Whilst, the planned palliative care at home service is not directly targeted at people with dementia, those with a co-diagnosis might eventually benefit from these planned measures. In general, terminally ill patients are admitted to different healthcare institutions, but the largest number is admitted into nursing and long-term hospitals (European Association for Palliative Care, 2005). However, palliative care for people with dementia at palliative care centres is not available.
Monitoring in the home via alarm systems
Tele-alarm systems are not available from the State or from NGOs, volunteers or the Church.
Personal assistance and home help
Under the new Law on Social Services, a distinction is made between social attendance at a person’s home whereby home helpers provide services for up to 4 hours per day and social care at a dependent person’s home whereby various specialists provide guardianship services for more than 4 hours per day (European Commission, 2006). Social attendance and social care are two types of special social services.
Assistance with daily activities, incontinence and skin care
The following services are available and completely funded by the State:
- Assistance with personal hygiene
- Assistance eating and drinking (not with the preparation of food)
- Assistance with mobility e.g. lifting, moving and walking
- Assistance/supervision taking medication
- Assistance dealing with incontinence
The first three services are funded through the municipal budget. These services are provided by municipal or contracted institutions/organisations but due to a lack of resources and capacity, they are often of limited scope. Priority is given to severely disabled people who live alone. The actual package of services provided is determined on the basis of an assessment of needs.
Assistance/supervision taking medication is also provided by municipal or contracted institutions/organisations and, as mentioned above, is often of limited scope with priority being given to severely disabled people who live alone. However, the actual assistance or supervision can only be provided by a licensed nurse and the costs are integrated into the primary health care capitation fee (which is the same mechanism used for financing integrated care).
Assistance dealing with incontinence is completely financed by the State Health Insurance Fund, but this is insufficient as physicians can only prescribe a limited number of incontinence pads. No assistance dealing with skin care (e.g. hydration and pressure sores) is available. Assistive devices are not available either.
Companionship, occupational therapy and home adaptations
Companionship/social activities are sometimes provided by patients’ organisations on a project basis. NGOs obtain limited financial support from the State for this. They therefore have to rely on donations to support these activities.
There are occupational therapy rooms in the majority of community health centres. However, the activities provided are more club-like than therapy orientated and very few people with dementia take part in such activities. Some of the costs are covered as an integrated component of the payment for community mental health teamwork (under the capitation fee). Other costs are paid through targeted NGO projects.
Home adaptations/transformations are available and completely funded by the State. However, this is only for disabled people with limited mobility. There is a list of relevant disorders and the vast majority are clearly of a somatic nature. Home adaptations for people with mental disorders are virtually inexistent (except in the case of children). If and when financed by the State, various proportions of the cost are borne by the State and municipal budgets (depending on each individual case).
The following home help services are provided by municipal or other contracted institutions/organisations:
- Assistance with housework
- Help with the preparation of meals (including meals on wheels)
- Assistance with shopping
- Assistance with laundry
Due to a lack of resources and capacity, the home help services mentioned above are of limited scope and priority is given to severely disabled people living alone. The actual assistance provided is dependent on a needs assessment.
According to official statistics, 7,900 people including 3,700 elderly people, 3,400 disabled elderly people and 700 disabled people of working age received home help in 2006. Most of them live in cities. 800 people (predominantly from rural areas) received financial compensation instead of support in kind. Home help is partly funded by State/municipal budgets and partly by service users subject to an assessment of their available income. In some cases, 100% public funding is possible.
Psychosocial support and training for people with dementia and carers
There is a general information service providing information about the availability of services to the public. It is completely funded by the State but according to Alzheimer associations, this is not sufficient for people with dementia and their carers.
Counselling for people with dementia, holidays for people with dementia and counselling for carers are available but of limited scope as there are very few NGOs providing such services. Those which do are partly funded by the State although less support for counselling carers is available than for counselling people with dementia. Patient organisations also receive some support from donors such as pharmaceutical companies.
There are no special provisions to enable carers to have a holiday e.g. payments or a substitute carer. Similarly, training for carers is not available.
Work/tax related support for people with dementia
There are no protective measures for people who have been diagnosed with dementia who are still in paid employment. They are not entitled to any tax refunds or benefits on the basis of their incapacity, to pay for someone to provide home care services or for necessary home adaptations.
People with severe dementia who need support with personal care and home help (from carers) are granted a cash payment. If they are living in a long-term social care facility, extra money is transferred from public funds to the social care facility on their behalf.
There are no reductions on television or radio licences or on public transport for people with dementia. However, old-age pensioners are entitled to numerous reductions on public transport, for newspaper/magazine subscriptions, telephone, Internet and visits to museums etc. (but not for TV and radio because they are mostly free of charge).
Work/tax related support for carers and carer allowances
Under the Law on Sickness and Maternity Social Insurance (IX-110/12.21.2000), a carer is entitled to take temporary paid care leave in order to take care of a member of his/her family. This leave is paid for by the employer and the social insurance fund.
Up to 30 days’ unpaid time off work for caring is granted to employees to take care (on their own) of a disabled person in need of permanent nursing care. Employees can also request unpaid leave for a period of time recommended by the health institution to care for a sick relative. The two forms of unpaid leave are covered by the Labour Code.
An agreement can be made at any time between the employee and the employer concerning flexible working hours and a work schedule fixed. This is also covered by the Labour Code.
Carers are not entitled to tax benefits/incentives for the care they provide or to subsidised pension contributions. However, since 2006 carers of people with dementia can receive a monthly allowance from the municipal budget. This is regulated by the Government By-law on Approval of 2003/2012 National Social Integration Programme for Disabled and the respective regulation related to the special care/attendance needs recognition.
Unless otherwise stated, information provided by Liuba Murauskiene (MTVC” Training, Research and Development Center) in July 2007
- Cerniauskas, G. and Murauskiene, L. (2000), Healthcare systems in transition: Lithuania, European Observatory on Health Care Systems, http://www.euro.who.int/Document/E69920.pdf
- European Association for Palliative Care (2005), EAPC task force on the development of palliative care in Europe: Lithuania, http://www.eapcnet.org/download/forPolicy/Lithuania.pdf
- European Commission (2006), Long-term care in Europe – Lithuania, MISSOC - http://ec.europa.eu/employment_social/missoc/2006/02/2006_02_lt_en.pdf
Last Updated: mercredi 15 juillet 2009