Protection of rights of persons with disabilities in Estonia

Monika Haukanõmm

The number of persons with disabilities who have been assigned a degree of disability has increased in Estonia year by year, whereas the size of population is decreasing.[1] Since 2004 the number of persons with disabilities has increased by 42%, thereby making 10.7% of the population as of 1 January 2013 (2011 – 9,6%) or 137,710 persons.[2] While discussing persons with disabilities, their situation and rights in Estonia it is necessary to realize that the needs of persons with disabilities differ greatly depending of the person’s age, the kind of disability and degree of disability, which is why degrees of coping and assistance measures vary significantly. The group of persons with disabilities is heterogeneous:

• 40.8% of them are men and 59.2% are female;
• 6.7% or 9214 persons are children (0-15 year olds); 41.3% or 56,813 persons are working age (16-64 year olds); and 52% or 71,683 persons are old age pensioners;
• disability was detected for the first time for 21,483 persons.[3]

Persons of working age who have a disability also are assigned incapacity for work in addition to degree of disability. Similarly to the rise in the number of persons with disabilities the number of persons receiving pension for incapacity for work is also increasing, and at an even faster pace. Each year a remarkable number of persons of working age are detected a permanent loss of capacity for work (15,885 cases of first time detection in 2012) and the overwhelming majority of persons, having entered the system of insurance against incapacity for work, won’t, unfortunately, ever leave it, remaining largely dependant of measures of social security and welfare services.

Political and institutional developments

It is obvious, looking at the statistics, that the number of people needing assistance and the non-active population is increasing whereas the number of working population is decreasing. The ever widening gap between actual needs of persons with disabilities and the offered measures of assistance (the old-age pension and pension for incapacity for work, grants, services, etc) has lead to the situation, where dissatisfaction with the existing situation is ever increasing, and the existing systems do not support person’s independent coping and development.

Already in 2010 did the National Audit Office come to the critical conclusions in its audit “State’s activity in supporting persons receiving pension for incapacity for work”[4] that the system of social benefits for disabled persons is not sustainable; the state is incapable of objectively assessing additional costs accrued because of disability; the state has no overview of social services offered to persons with disabilities; and the state does not encourage persons receiving pension for incapacity for work to return to labour market. The National Audit Office also drew attention to the fact that the person’s ability to make money is not considered when paying pension for incapacity for work. An analysis about efficiency of Estonian system of social protection was also drawn up by Praxis Centre for Policy Studies in 2011.[5] OECD gave its recommendations to Estonia in October of 2012, which listed main challenges and recommendations for changing the support system for persons with disabilities. OECD report states that:

• the number of persons with disabilities receiving grants in Estonia is rising faster than in any other OECD state;
• the number of persons entering the system of pension for incapacity for work is rising ever since the economic crisis years, but persons leaving the system (including not continuing to pay pension for incapacity for work after a certain period of time) is minimal;
• it is a problem that just one profession is considered when appraising incapacity for work (either the one the person acquired or the one the person worked at for longest), while it is not assessed what the person could do with the rest of his or her capacity for work;
• the current system does not offer enough (integrated) methods to bring persons with permanent loss of capacity for work back to the labour market (work-related rehabilitation, retraining, labour market services, health promotion, tax incentives for employers hiring workers with diminished capacity for work, etc).

For the aforementioned reasons, in the first quarter of 2012 the Ministry of Social Affairs initiated a reform of insurance against incapacity for work with the approval of the government, which aimed to help persons who have stayed away from the labour market for various reasons (for example, because of an accident at work, occupational disease, temporary or long term incapacity for work) back to labour market as quickly as possible. This reform also directly affects persons who have been detected to have a permanent loss of capacity for work.

The state has initiated and important process, where the main focus has been moved from passivity to supporting activeness. The principle of promoting and keeping persons’ health to avoid permanent loss of capacity for work and lowered income and the person entering the scheme of social protection benefits is a welcome one. There are plans to start offering persons various methods to keep active and not “fall away” from the labour market in case of temporary and permanent loss of capacity for work. This includes measures for improving health, rehabilitation, labour market measures, customisation of the workplace and other measures.

In certain cases (to receive benefits) the persons have the obligation to participate in the offered measures (for example labour market services). The novel approach for Estonia to allow persons on certificate for sick leave to carry out work to their capabilities in the future (currently persons on certificate for sick leave and receiving benefits from health insurance fund are not allowed to work – receive wages as well as benefit) is also a reasonable one. Therefore, there is a plan to give the attending physicians the obligation to assess the patient upon issuing a certificate for sick leave – whether and how quickly and how much might the person work; which measures he or she needs (for example, partial working time, reduced work obligations, working from home, adjusting the work place, transferral to other work, etc).

There are also plans to increase the obligations of employers to maintain and promote employee’s health, and create a work environment that is sustainable for health. Implementation of tax incentives for employers, inclusion of private insurance are planned to support employers; it is possible to cooperate with the Unemployment Insurance Fund in adjusting the work place. The role of occupational health needs to be increased along with increasing employers’ responsibility, in order to prevent and avoid occupational diseases and illnesses caused by work. The employers will be left with the obligation to guarantee medical examination of employees and apply recommendations of work environment specialists for improving work environment; occupational health doctor may participate in appraisal of capacity for work – meet the person, appraise his or her place of work and nature of work and give the employer an appraisal about conditions for guaranteeing capacity for work. In the course of appraising capacity for work the person’s social and work capability will be assessed alongside his or her medical conditions. Therefore, the intention is, instead of determining percentage of loss of capacity for work, to assess whether the person has capacity for work, partial capacity for work or no capacity entirely and whether the person qualifies for benefits. Along with benefits the person will be offered services developing, restoring and supporting capacity for work (labour market services, work rehabilitation, retraining, supporting means); the person is expected to participate in the recommended measures (introduction of the so-called activity requirement).

Legislative developments

2012 can be considered a remarkable year from the point of view of protection of human rights of persons with disabilities – several important steps were taken on state level, which create good premise for protection and promotion of human rights of persons with disabilities, however, there are still problems, which have not been eliminated.

A memorandum on principles of cooperation was signed by the government and representative organisations of persons with disabilities 30 March 2012.[6] The purpose of the cooperation memorandum is to value the civil society and promote social integration of persons with disabilities. The cooperation memorandum also aims to involve representative organisations of person with disabilities in national decision-making processes more, and not only in areas in jurisdiction of Ministry of Social Affairs, but also in jurisdictions of other ministries, increase efficiency of cooperation between ministries and representative organisations of persons with disabilities for implementation of the UN convention, and increase involvement of representative organisations of persons with disabilities in decision-making that concerns them on state as well as local government level.

Signing of the memorandum is evidence of the fact that the need to include persons with disabilities in decision-making concerning their lives and including representative organisations of persons with disabilities in shaping the politics has been understood on government level. Cooperation is an important keyword – both parties consider each other equal partners and cooperate in all forms of inclusion – whether informing, consulting or common implementation of activities. The memorandum agrees that the parties promote inclusive and accessible society horizontally in all areas of politics, however, with focus on predominantly education, employment, constructed environment, transport, communicating information and social protection. An important topic that was pointed out was the need to cooperate and coordinate in creating a positive image of persons with disabilities.

Estonia joining Convention on the Rights of Persons with Disabilities and its Optional Protocol adopted on 13 December 2006 by UN’s General Assembly on 30 May 2006 can be considered the most important step.[7] The purpose of the convention is to promote, protect and guarantee equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity. The community of persons with disabilities prepared for joining the convention and waited for it for almost five years. From the point of view of protection of rights of persons with disabilities this convention is an important international agreement.

The convention states clearly that the topic of rights of persons with disabilities are questions of human rights and the state is obliged to implement and introduce measures to promote rights of persons with disabilities in all areas of life without discrimination. The measures include: adoption of legislation against discrimination when necessary, elimination of legislation and practices discriminating against persons with disabilities, inclusion of persons with disabilities in drafting of new politics and programmes. In November of 2012 work began on national development plan for protection of rights of persons with disabilities for 2014-2020 on the initiative of Ministry of Social Affairs. In the course of developing the strategy the main goals of Estonia’s disability politics will be specified, the priority actions will be set, thereby concentrating of guaranteeing the rights of persons with disabilities and improving their independent coping, including areas important to persons with disabilities, such as social inclusion and participation in civil life, accessibility, education, participation in life-long education, employment and use of social and health services.

Observing disability from the point of view of human rights is a development from the viewpoint of the state and all fields of life, as persons with disabilities are considered less as subjects of charity or objects of decisions made by other people, but people who have all the rights.

For many years attention has been drawn to the need to amend the Equal Treatment Act, which aims to guarantee persons, including persons with disabilities, protection from discrimination. §2 of Equal Treatment Act specifies the area of application, which is dissatisfying as the protection of rights of persons with disabilities is guaranteed in a much narrower extent as protection of rights based on nationality, race or colour. This raises the question of whether persons with disabilities can be discriminated against, unlike those mentioned before, in education, in receiving social welfare, health care and social security, including social benefits and in accessibility of goods and services offered to the public, including accommodation?

This problem is referred to by conclusions of articles 1, 9, 10, 15, 18, 20, 24 and 25  of the European Social Charter compiled by the European Committee of Social Rights in January of 2013, according to which Estonia’s legislation on non-discrimination does not comply with § 3 of Article 15. § 3 of Article 15 of European Social Charter states that full social integration and participation in the life of the community must be promoted through measures (including technical aids) aiming to overcome barriers to communication and mobility and enabling access to transport, housing, cultural activities and leisure. The European Committee of Social Rights came to the conclusion that Estonia’s situation is not in accordance with Article 15 § 3 and gave Estonia a negative conclusion. The negative conclusion is directly related to the wording of the Equal Treatment Act, according to which it is not prohibited to discriminate against persons with disabilities in receiving social welfare, health care and social security, including social benefits, in education and in accessibility of goods and services offered to the public, including housing.

According to area of application of the Equal Treatment Act the Gender Equality and Equal Treatment Commissioner has no jurisdiction to interfere in possible cases of discrimination against persons with disabilities, which take place in receiving social welfare, health care and social security, including social benefits, in education and in accessibility of goods and services offered to the public, including housing. Thereby the lawmaker directly narrows the option of persons with disabilities, one of the vulnerable target groups, to turn to the Gender Equality and Equal Treatment Commissioner for help.

In addition, several acts of law, which are important from the point of view of persons with disabilities, were adopted.

1 June 2012 amendments to Social Benefits for Disabled Persons Act and State Pension Insurance Act came into force, which means the work of family physicians is simplified by an electronic system carrying health data for determining degree of disability and permanent incapacity for work. If the family physician has correctly entered the data concerning the person’s health in the electronic system, there is no need to form a supplementary description of health on paper to formalise the disability or permanent incapacity for work. If the data is insufficient to make a decision, the National Social Insurance Board will have the right to request for more data about the person’s health. Medical experts and officials carrying out expert analyses will be created access to the person’s health data, which the person has to give consent for. The parallel option of forwarding data describing the state of health on the formulary of description of state of health will be preserved. For the person nothing will change in the process of applying for and detecting incapacity for work, but the doctors will be able to use the e-solution to make their work more efficient.

The National Social Insurance Board started issuing the disability card to persons who don’t have a pension certificate upon their request from 1 September 2012. The disability card establishes degree of disability as well as duration. Children with disabilities and persons of working age, who don’t have at least 40% loss of capacity for work, have the decision of the expert analysis as the only option to prove their disability, which contains more delicate personal data than is necessary to prove the right to receive the prescribed concessions. Therefore this card can be applied for by those persons who don’t have pension insurance (persons receiving pension for incapacity for work and old-age pensioners), which means the card is mainly aimed at children with disabilities. Period of validity of the card coincides with detection of degree of disability time limit and is valid with an identity document.

Several amendments were finalised at the end of 2012 which came into force in 2013. Unfortunately the lawmaker shortened the limitation period for filing a challenge – when a person finds that decision of detection of degree of disability and additional costs or expert analysis of incapacity for work breaches his or her rights or limits his or her freedoms, the person has the right to file a challenge with National Social Insurance Board within 30 days starting from the day the person became aware of the expert analysis or should have become aware of it. The limitation period of filing a challenge in case of applying for rehabilitation and special welfare services has been shortened as well – from three months to 30 days.

Statistics and surveys

The number of persons with disabilities and persons receiving pension for incapacity for work has shown a rising trend for the last ten years,[8] expenses on social protection are rising, forming over 30% of the state budget,[9] while dissatisfaction of the target group is also rising. Various studies and analyses have come to the conclusion that Estonia’s system of social protection is not sustainable, does not support persons’ activity and participation, and remains on the level of passive measures.

Estonian Institute of Human Rights carried out a poll on public opinion on the topic of human rights in Estonia in 2012.[10] The poll revealed that issues of persons with disabilities were seen as belonging in the sphere of human rights. The topics mentioned most often were issues related to equal rights of women, which was followed by the opinion that freedom of expression is being breached, including that the people do not get their say. The third topic was unfairness of court trials. It was also said that the rights of children, persons with disabilities and pensioners are not always guaranteed. The poll overwhelmingly stated that the greatest problem is considered to be social inequality and entirely 24% of respondents found that there are problems with guaranteeing human rights of persons with disabilities in Estonia.

In 2012 the discussion on caregivers of kins and care work load intensified, focusing on the family’s obligation to take care of a family member who needs help and how far the lawmaker allows to take this obligation. The Ministry of Justice and the Ministry of Social Affairs are cooperating in carrying out codification of social welfare law, including the Social Welfare Act in the course of the programme “Developing better legislative drafting” funded by the European Social Fund. The ministries ordered an analysis in the course of it in 2012 – “Family’s obligations to a family member needing help (because of social problems)”.[11] The analysis states that family’s and the state’s duty to assist are linked and how large a duty is taken on by the state in the form of implementing social security benefits and measures preventing difficulties in coping, and how large a duty is placed on the family by the state is determined by the legislator.

It can be said in generalized manner that the family may be placed a duty to assist firstly in cases when the person has non-material difficulty coping caused by some typical cause (unemployment, old age, permanent incapacity for work, occupational disease or work accident, illness, pregnancy and giving birth or loss of a provider), which the person needs social service to overcome. In such case, in incapacity of the person, the person’s family may be placed the obligation to pay for the service. If it involves an adult the family can generally be obliged to provide the money: the person needing the service must procure the service him- or herself and receive family’s support only in paying for it. If it involves a minor and the person assisting is a parent the person must be offered assistance in kind (it can mean organising the service and funding it, it does not necessarily have to mean caring for kin). In certain special cases the carer of an adult may also provide a service in kind. If the person’s coping is impaired by a disability or additional expenses accrued for the family and additional needs (for example, various services), then the person has the right to assistance, whereas in those cases the states and family’s duty to assist are extremely intertwined.

Who are the family members who the duty to assist can be imposed on? Generally speaking: those family members whom the constitution considers family. Here the definition of the family in the constitution is an open one – depending of the views of the society. A family in the view of the constitution in our appraisal are certainly persons who are married – a man and a woman in a stable cohabitation relationship, if they have close personal relations, which might also have other traits of family life (for example, existence of children); descendants. The limiting condition is if it is a matter of adult descendants or descendants over a generation, to consider these persons a family they must enjoy a special relationship of dependency in addition to the usual emotional connection (for example, an adult child with a disability dependant on the parent, or need for assistance in old age, and cohabitation with (grand)children). It must be considered when establishing a duty to assist that the duty does not create a situation where the person needing help remains without assistance or that the person providing assistance has difficulty in coping him- or herself.

The survey carried out by Estonian Chamber of Disabled People in October-November of 2012 reveals the following:

• The greatest problems with social welfare are insufficient access to services and grants offered by the local government to support coping (primarily transportation for the disabled, service of personal assistant, service of support person, day centre, but also adjustment of housing, care services, social housing, sing language interpretation service, caregiver’s allowance), and great variation of these services and grants in different local governments. No requirements have been established for the services or the right to receive the service on the level of act of law. There are recommended guidelines for the services. Another problem area are the long queues and complication of arrangement.
• Insufficient (specialist) preparation of workers in social welfare, low level of motivation and unsuitable personal characteristics for working with persons with disabilities (negative attitude, prejudices, indifference, lack of empathy; information about opportunities and rights is not available to the people; offering assistance is not based on the person’s needs).
• The most serious problems in education are the insufficient knowledge of pedagogues of regular schools and low level of preparation for teaching students with special educational needs. Also the scarcity and/or lack of support services; scarcity of specialists handling students with special educational needs; poor accessibility of educational institutions.
• The low level of awareness of opportunities and concessions of employers and workers with disabilities, the employers’ low level of awareness or fear for hiring workers with disabilities or chronic illnesses, and low level of motivation of persons with disabilities were pointed out as most serious shortcomings in the employment sector.

Good practices

2012 clearly indicated that organisations dealing with persons with disabilities have become stronger and more serious partners for the state and local governments, in the process of shaping politics, improving awareness and in informing as well as service providers. The memorandum on principles of cooperation between the state and persons with disabilities is a good example of that. The target group is included in legislative drafting in early stages increasingly often, many amendments of acts in various spheres reach persons with disabilities to give their opinion on. The cooperation memorandum established the Body for Co-operation, which aims to increase efficiency of wide-based cooperation between all the ministries and representative organisations of persons with disabilities in order to guarantee that persons with disabilities are included in decision-making processes that affect them and shaping of politics and guarantee functioning of mutual exchange of information.

Closing words

Estonia is a small state, where each person must become more important and where everyone must be given the opportunity to participate and contribute to society according to their capabilities. Respect and tolerance for differences and acceptance of persons with disabilities as a natural part of society is what is often missing in Estonia. General orientedness on success has created the situation where very many members of the society (including persons with disabilities) feel left out. On the other hand, positive attitude sparks positive change for the entire society. Following this general principle should be prevalent in the whole society. An act of law or a document itself will not improve anyone’s life. An open attitude, inclusion, awareness, good will, initiative and guaranteeing sufficient human and financial resources can improve the life of persons with disabilities. Persons with disabilities are full members of the society who shouldn’t need to emphasize existence of various acts of law and their special needs to participate in the society in the usual way. Following the appropriate acts of law and assisting all persons requiring assistance should be the obvious duty of various institutions.

The most important step taken in 2012 was joining the UN Convention on the Rights of Persons with Disabilities. The principles of the convention are generally represented in Estonian legislation, but there is a long way to go to complete implementation of the rights. The process of preparing for ratification of the convention and the first year of application showed that the understanding of needs and rights of persons with disabilities is uneven. Therefore, multi-faceted informative work is needed – comprehensible information is needed by persons with disabilities and their family members, educational and social workers, specialists from other areas, employers and the whole society. Thematic research, development and science projects and training of new specialists on persons with disabilities is also needed.

The following has to be understood unequivocally in order to implement the convention in everyday life:

• Following the law must become the norm! We are currently in a situation where the Estonian legislation complies with principles of the convention, but does not yet provide protection of rights.
• While amending legislation and working out the regulations their long term effect should be considered. The state must support and develop readiness to follow the laws.
• Offering necessary measures to all persons who need assistance is not a one-off activity, but presumes continuous effort, where the aim is to support each person in a way that meets his or her needs. Providing assistance is natural and understandable and should not have a charitable dimension.
• Rights of persons with disabilities have been fragmented between numerous acts of law; they are often general and declarative and do not offer actual protection. General measures aimed at all persons are not enough to guarantee rights of persons with disabilities, as often special measures and so-called “positive” discrimination or concession-making is needed.

Recommendations

• Work out a national strategy for protection of rights of persons with disabilities along with an operational programme in order to implement the convention.
• Establish on legislative level, which supporting social services and grants persons with disabilities are entitled to despite the source of financing.
• Insert a module on disabilities into basic training of specialists dealing with persons with disabilities (for example, social workers, care workers, teachers, police officers, bus drivers, taxi drivers, etc) and promote opportunities for additional training to raise awareness and decrease unequal treatment.
• Amend § 2 of the Equal Treatment Act so that a common prohibition of discrimination extends to all bases, which would enable to extend the jurisdiction of the Gender and Equal Treatment Commissioner to deal with issues of persons with disabilities.