Situation and rights of persons with disabilities

Monika Haukanõmm

As of beginning of 2011 the persons who have been afforded a degree of severity of disability make up 9.6% of the population or a heterogeneous group of 128,087 persons:

•                59% of them are female, 41% male;

•               53% of them are old age pensioners (at least 65 years old), 41% working age (16–64 years old), 6% are children (0–15 years old).[1]

Persons with disabilities make up a remarkably large group of the population, which causes the need to take steps to promote the protection of rights of persons with disabilities and establishment of equal circumstances. Therefore, taking the aforementioned into account, there is an increasing need for protection of rights of persons with disabilities on all levels – national, local government, individual as well as international. The attitude towards persons with disabilities is slowly changing in Estonia, the focus in no longer on the presumed “fault” of the person, and the disability is no longer seen as a shortcoming or an illness. On the contrary, the disability should be viewed as “the pathology of the society” – the society itself is incapable of including persons with disabilities and dealing with their differences. In order to include persons with disabilities in many facets of the society it is necessary to invest in all levels horizontally. It is essential to pass on the message in the society that persons with disabilities have rights equal to all others and these rights must be protected, not only in words, but also in everyday reality.

Political and institutional developments

In 2011 a big step was taken in protection of rights of persons with disabilities that had been prepared for four years. The UN General Assembly adopted the Convention on the Rights of Persons with Disabilities and its Optional Protocol on 13 December 2006, which was opened for signature on 30 March 2007.[2] The goal of the convention is to promote, protect and guarantee complete and equal execution of all human rights and fundamental freedoms by persons with disabilities and promote respect for their natural dignity.[3] The ratification of the convention by Estonia has been awaited since the President of the Republic of Estonia signed it on 25 September 2007. From the point of view of protection of rights of persons with disabilities the convention can be considered and important international agreement, which obliges states to implement and introduce measures to promote the rights of persons with disabilities without discriminating against them. These measures include: adoption of anti-discriminatory legislation when necessary, elimination of legislation and practice discriminating against persons with disabilities, and also inclusion of persons with disabilities in drafting of new policies and programmes. On 29 December 2011 the Government of Republic of Estonia approved the draft act ratifying the convention and the optional protocol and presented it to Riigikogu for discussion. According to the explanatory memorandum in 2012 work will begin on national strategy on improving rights and independent coping of persons with disabilities and its yearly action plans. Priority concerns and necessary budgets for specific years will be clarified during drafting of the strategies. Such developments can be considered progress as there has been a shift in attitude towards disability and persons with disability on a national level. Nevertheless, there is still no document concerning development of lives of persons with disabilities on a national level. Therefore, the social, economic, political and environmental circumstances that pose obstacles before complete inclusion of persons with disabilities must be identified and removed. Persons with disabilities are increasingly viewed as persons with all the rights rather than subjects of charity, or objects of decisions made by others and that is certainly a progress from the point of view of human rights. The rights based approach in Estonia must increasingly focus on considering and supporting persons’ peculiarities by creating conditions to completely include persons with disabilities. Promotion and advancement of rights does not mean just providing (social) services, but also taking wider measures to change negative and marginalising attitude and customs towards persons with disabilities. The Estonian legislative environment is in accordance with the provisions of the convention and therefore there are no significant legislative problems with complete inclusion of persons with disabilities. However, there are problems with implementation of national acts and with monitoring, which allows for situations where persons with disabilities experience obstacles and hardship in coping with everyday life. “The development plan for children and families for 2011–2020” was also published in 2011, which deals with protection of rights of children, including children with disabilities. The development plan includes activities aimed specifically for children with disabilities, which help satisfy special needs of children with disabilities and their families, for example better availability to children with disability of services that are available for everyone in healthcare, education and social areas (including organising the system of early detection and counselling, increasing parents’ skills and knowledge, training specialists, etc).

Legislative developments

There were no essential legislative changes in the area of persons with disabilities in 2011, but some minor amendments were made. The Ministry of Social Affairs prepared advisory guidelines to social welfare services in Estonian and Russian language (a total of 12 guidelines) at the end of 2011.[4] The purpose of the guidelines is to describe advisory requirements, which to consider while providing services. The guidelines enable the service providers and the consumers or their kin to understand the content of the service, develop and assess expectations of the services and to know their rights and options in using the service. The local governments can take the guidelines into consideration in providing services or in delegating them to the private or the third sector. The guidelines are necessary for the consumers or their kin in understanding the content of the service and developing their expectations of the service and knowing their rights and options in the process of being referred to the service as well as during provision of the service. As the client is in a weaker position and requires help in guaranteeing his fundamental rights, it is the obligation of the public sector to guarantee the client at least the minimum standard of the service. If the requirements are not regulated there is a risk that the client does not receive the service and help that suits his needs.[5] Unfortunately the guidelines could not be legalised in the Social Welfare Act due to the opposition of the partners, which means that the actual benefit of the guidelines to the consumers of the service may be limited and depend on the will of the service provider. European Parliament adopted Regulation 181/2011 on the rights of bus passengers on 16 February 2011. The regulation comes into force in Estonia on 1 March 2013. The regulation states that persons with disabilities and limited mobility should be able to use bus services like all other persons, regardless of whether the limited mobility has been caused by disability, age or some other factor. The Traffic Act that came into force on 1 July 2011 stated special requirements for visually impaired persons and for persons with mobility disability, including for movement of persons in wheelchairs and of visually impaired persons on pavements, as well as special rights of vehicles serving persons with mobility disability or blind persons (to parking, parking spaces, stopping in no stopping zones). Regulation no. 90 of the Minister of Social Affairs on conditions for issuing parking cards for vehicles serving persons with mobility disabilities or blind persons also came into effect at the same time. The Government Regulation no. 1 of 6 January 2011 “National curriculum of basic schools” and the Government Regulation no. 2 of 6 January 2011 “National curriculum of secondary schools” also regulate questions concerning individual curriculums. For example, they establish standards for students with mental disabilities, who study in simplified, coping or nursing classes on the recommendation of the counselling committee. The Equal Treatment Act holds a great meaning for persons with disabilities as it aims to guarantee persons’, including persons with disabilities, protection from discrimination. However, § 2 of the Equal Treatment Act cannot be considered to be satisfactory, as the protection of rights of persons with disabilities seems to be guaranteed to a much smaller extent than the protection afforded on the basis of nationality, race or colour. One cannot help but ask whether discrimination of persons with disabilities, unlike the aforementioned groups, in education, social welfare, healthcare, in social security services, including in receiving social benefit and goods and services for the public, including availability of accommodation is allowed? § 12 of the Constitution states that everyone is equal before law and no one shall be discriminated against on any basis, yet the general protection may not be enough and the persons with disabilities need additional legal protection, which emphasises the rights and creates favourable conditions also through “positive” discrimination in order to realise their rights.

Statistics and surveys

It is the obligation of the state to gather more and more relevant information, including statistics and survey data enabling wording and implementation of necessary policies for persons with disabilities. Important surveys referring to problem areas have been carried out in recent years, the availability of the statistical data has been improved and new places for gathering and publishing data have been implemented. Statistics Estonia, for example, publishes data on severity of disability, permanent incapacity for work and self assessment on limitations caused by health, which is found out from data on persons and households. The National Audit Office published a report at the end of 2010 on state’s activity in supporting persons with disabilities and persons receiving pension for incapacity for work.[6] The National Audit Office assessed whether the benefit system for persons with disabilities and persons with incapacity for work is sparing and guarantees that only those persons are supported whose expenses stemming from disability need covering or who are not capable of earning a living. The National Audit Office discovered that the current system is not operating in a reasonable manner – it does not guarantee diverse help and that it reaches those who really need it. And yet considerable sums are spent on support of persons with disabilities and for pensions for incapacity to work. It was also established that the state does not facilitate the persons who have lost capacity to work to return to the labour market.

The state support for persons with disabilities in the target group of children and the elderly have stayed the same for years and no longer suit the present situation and actual needs. The Praxis Center for Policy Studies published a survey on options for sustainable funding of Estonia’s social security system[7] at the end of 2011, which aimed to give an assessment of sustainability of Estonia’s current system of social security. Age, unemployment, illness and incapacity to work were seen as social risks. Both surveys came to the conclusion that the current social security system is not sustainable nor does it cover the actual needs of persons, which means that persons’ rights are not protected.

Good practice

Estonian Chamber of Disabled People with its member organisations has become a more serious partner to the state and the local governments over the years. The fact that the relevant legislation is sent to the chamber for coordination is a testament to this and that there is a desire to include representing organisations and to take their opinions into account. Inclusion in decision processes improved in 2011 from the level of Riigikogu until the local governments. Organisations for persons with disabilities, local governments, their representative organisations and service providers were included in drafting of the social services guides. There was also an inclusion seminar for introducing the guidelines and for making recommendations.

Trends

The number of persons with disabilities has risen by 38% in the last nine years, the number of person receiving pension for incapacity for work has risen by 75%. The state’s expenses on social benefits and pensions have risen each year, whereas the situation of the person does not change, in fact, things have rather got worse due to rise in living expenses. The scheme for incapacity for work benefits is ineffective and fragmented on state level; persons are only offered passive measures. The scheme for incapacity for work benefits does not motivate persons to return to labour market as they are not offered rehabilitating work and health care services, the rehabilitation is offered too late and in too small dosages, neither is it connected with incapacity for work. Moreover, the state sees a person’s incapacity for work, not the ability to take on other kinds of jobs or learn a new trade. Therefore, it is highly likely that persons with disabilities and persons with incapacity for work will never leave the system once they have entered it. Once the person has been declared incapable for work he will be incapable for work for ever and become increasingly dependent on aid measures, which do not guarantee a dignified life. In addition, the state has not been consistent in guaranteeing capacity for work of the work age population. The state has not taken significant steps to make the work environment safer. The local governments play an equally important role in guaranteeing coping of persons with disabilities, as it is their obligation to offer support services, benefits, as well as auxiliary measures.

Conclusion

The protection of rights of persons with disabilities has been well guaranteed in Estonia if one were to consider just the legislative level – our legislative environment is in accordance with the internationally approved level. But the implementation of rights regulated on the level of the Constitution as well as specific acts in everyday life is less than satisfactory. Even though persons with disabilities have the right to education, social services, adequate standard of living and social protection, work and health care, each area contains shortcomings and persons with disabilities cannot exercise their rights on the same basis as other persons. For example, the opportunities of a young blind/death person or a person with a mobility disability to obtain equal education are scarcer as support services which are specific to the disability are needed, as well as customisations, knowledge, a level of preparation, etc. The queues for vitally necessary social and health care services are also long, the quality of services poor and the availability fluctuating; people lack information about necessary services and benefits; the help on hand is not sufficient, etc. Lack of funds stands in the way of exercising several rights and there are no sanctions on the local government level to change the situation; neither is any monitoring carried out. Estonia is a small country where every person matters, therefore, also persons with disabilities must be valued more than they are currently valued. In order to decrease the expenses of the state in the long run and to increase the independence of persons with disabilities so that persons with disabilities can be contributors, the early detection of special  needs, quick and needs-based reaction and offering of auxiliary measures, increase of the public’s awareness and change of attitude are necessary. Things have got better over the years and increasingly more young persons with disabilities are able to have a good education, participate in the labour market, live independently and move freely on streets, but there are still a number of obstacles, which do not allow them to participate in everyday life or make it strenuous. There are reason to be mildly optimistic due to the increasing number of persons with disabilities, increasing expenses and in anticipation of the ratification of the convention and hope that the topic of persons with disabilities becomes a priority in Estonia and that it will be studied broadly by involving all ministries according to their jurisdiction, as there still is no plan guaranteeing rights of persons with disabilities. The rights of persons with disabilities are divided between many acts of law; they’re often general and declarative and offer no actual protection. General measures aimed at all persons are not enough to guarantee rights of persons with disabilities, because special measures and the so-called positive discrimination or making allowances are often necessary.

 Recommendations

• Draw up a national action plan and strategies for protection of rights of persons with disabilities;
• Carry on with attempts to harmonise and regulate availability of social services on legislative level;
• Increase the awareness of persons with disabilities of their rights and the ability to stand up for their rights. There should be constant training of specialists who come into contact with persons with disabilities and the public’s awareness of issues of persons with disabilities should be increased;
• Consider expanding jurisdiction of the Gender Equality and Equal Treatment Commissioner or creating the institution of ombudsman for persons with disabilities for better protection of rights;
• Amend § 2 of the Equal Treatment Act so that the prohibition of discrimination applies on all grounds equally.