FINNISH DISABILITY FORUM 2023

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presented to the CRPD Committee pre-sessional working group for the 18th session as a submission by Finnish Disability Forum (Finnish OPD) for the list of issues in relation to the initial report of Finland

Introduction

Finnish Disability Forum

The Finnish Disability Forum is a co-operative organization of 27 national disability organizations established in 1999 to promote the social status and well-being of persons with disabilities. Finnish Disability Forum represents Finnish disability organizations in national and international cooperation, especially in the European Disability Forum (EDF). The Finnish Disability Forum’s domestic advocacy activities focus on ensuring equal participation of persons with disabilities.

The results presented in the report  are based on a survey conducted jointly by Finnish disability organizations and the Human Rights Centre. Its results are referred to in the text as the VF survey (VFS). The survey was conducted in spring 2018, just under two years after the ratification date, and highlights the perspective of persons with disabilities on how the entry into force of the CRPD has influenced their lives. The survey responses provide a unique, valuable, and comprehensive picture of the challenges experienced by persons with disabilities in Finland today.

The questions were based on the rights and objectives of the UN Convention on the Rights of Persons with Disabilities. The online questionnaire was available in Finnish and Swedish from 27 March to 30 May 2018. In addition to the online questionnaire, there was also a PDF-based printable version of the questionnaire to improve accessibility. A cover letter was also sent with the questionnaire, explaining in more detail the purpose of the responses and the significance of the initial state report.

The opportunity to respond to the survey was advertised through, for example, the Finnish Disability Forum’s own and member organizations’ networks. In practice, the survey was made visible on the website, in social media and in personal encounters, for example at various events. Despite the large number of respondents (more than 2000), a significant number of responses (around 25%) were not completed. The non-responses are not discussed in this report.

EXECUTIVE SUMMARY

There are serious problems in the implementation of the rights of persons with disabilities in Finland, notwithstanding that the legislation and the system of services are appropriate on the surface, problems in the implementation affect to such an extent as to significantly threaten the realisation of human rights and fundamental freedoms of persons with disabilities; the most important ones we want to raise are the following:

Failure to comply with the obligation to ensure full participation and inclusion, together with only apparent inclusion prevent and delay the realisation of the rights of persons with disabilities. Inclusion is also lacking at the level of client processes in disability services.

One of the main causes for problems in the fulfilment of rights of persons with disabilities is the competitive tendering of disability services, which emphasises low prices at the expense of quality. As a method of organising services, competitive tendering infringes on the participation of persons with disabilities in matters that concern them, since only the commissioner and the provider of the services are recognised to have legal standing in these cases, not the client with disabilities themselves.

Finland has not taken enough measures to stabilise and secure the status and funding of organizations of persons with disabilities (OPD), including the national umbrella organisation, Finnish Disability Forum. Rather, the funding of organizations is in constant decline, and the reorientation of funding severely threatens their functioning and autonomy, and thus full inclusion and participation of persons with disabilities.

The inclusion of children with disabilities and their right to express their views and to be heard on matters that concern them is not realised especially for children with hearing and speech impairments. Children with disabilities are significantly more likely than other age groups to go without personal assistance, although the UN Committee on the Rights of the Child has repeatedly drawn Finland’s attention to this (CRC/C/FIN/CO/4, para 40 b). Children with disabilities even end up in child protection services or placed outside the home because the services their families need are not available. Inclusion in the education system has been implemented without the necessary disability support being provided in the child’s local school. There are also accessibility deficiencies in educational institutions.

Accessibility issues in Finland concern as well the built environment and digitalisation as services. Accessibility is not sufficiently recognised in legislation. The construction of accessible housing continues inadequate and public transport is not accessible to all, even in the largest cities. Educational facilities are deficient in accessibility. Many online services are not accessible for all. Cognitive accessibility is often overlooked. Digitalisation improves accessibility of services for some persons with disabilities but excludes some people with visual impairments and people with cognitive disabilities from the activities of society.

The exceptional circumstances caused by the COVID-19 pandemic exacerbated many of the challenges to the implementation of services and rights for persons with disabilities. For example, services were terminated without any decision being taken to terminate or replace the service. The right of persons with disabilities to see their relatives or necessary professionals was unlawfully restricted in residential services.

The right of persons with disabilities to exercise their legal capacity is insufficiently implemented in Finland, especially for persons who need support to do so. The exercise of legal capacity is increasingly dependent on having strong electronic identification tools, mainly bank credentials. These are very difficult to obtain if a person needs the assistance of another to use them, because of a physical or cognitive disability. Such reasonable accommodation is allowed in this case, yet rarely offered.

Legal certainty for persons with disabilities is not sufficiently implemented in Finland.

There is no regular assessment of the impact of legislation on persons with disabilities, nor is there a systematic assessment of the impact of legislation on persons with disabilities at the level of its implementation. Even the highest courts are not sufficiently familiar with or do not apply the UN CRPD. At the level of public officials, the CRPD is often completely left aside. Public authorities draw up and follow implementing guidelines which are often contrary to the law and case law, leading to non-grounded and lengthy appeal procedures. There are no sanctions for the use of unlawful implementing measures. Both the supervision of services and its resources are inadequate; and self-monitoring, which is a key element in monitoring, is not effective, as evidenced by the many legality review decisions. Attempts to address the deficiencies may lead to retaliatory measures against the client or the relatives.

The right to self-determination of persons with disabilities is being restricted in services in ways that are not in accordance with the law. Violence against persons with disabilities, especially women, is more common and more serious in Finland than violence experienced by non-disabled persons. Children with disabilities also experience more emotional and physical violence than their non-disabled peers.

There are not enough housing options to meet the individual needs of persons with disabilities and, for the most severely disabled persons, the choice of housing is mainly in the form of group accommodation, where the right to self-determination is poorly exercised (Article 19, cf. CRPD/C/GC/5, para. 24). The implementation of personal assistance and transportation services also faces challenges. There are varying interpretations of the conditions for granting personal assistance by public officials and courts, and serious problems with the availability, turnover and skills of assistants. Lack of support for independent mobility and transport jeopardises the inclusion of persons with disabilities in many areas of life.

Within the services system, discretion is not being applied in individual cases, which has led to the emergence of groups-in-between. For example, persons who are neurodiverse, with rare diseases, brain injuries or mental ill health are often excluded from the sphere of both disability services and the general social services; this exclusion can lead to an escalation of problems and the need for more burdensome services later.

More often than the rest of the population, persons with disabilities must live their whole life course depending on minimum social security, as disability-related extra costs are not fully covered. Life with a disability is too often a life in poverty, as even a good education does not significantly increase either the rate of employment or income of persons with disabilities. Employment discrimination against persons with disabilities is common, but it remains largely invincible to the judiciary, which makes it even more difficult to solve.

Finland has not taken sufficient action to produce systematic data on issues concerning the rights of persons with disabilities, which makes it difficult to solve any of the problems.

On 1 March 2023, Finland adopted a reform of its disability legislation, which alone will not be enough to remedy the problems described above, especially as the funding of the new legislation is a major concern. The entry into force has been delayed till October 2024, a new Bill will be drafted.

The inclusion of disability organizations is essential to ensure that the voice of persons with disabilities and the specific expertise the OPDs have about the daily lives and problems faced with disabilities, as well as on the application of legislation and the lack of implementation of services, all these are made available to the authorities developing legislation and services. The current lack of inclusion leads to a lack of respect for the fundamental and human rights of persons with disabilities and even to serious violations of their human rights.

Part 1 GENERAL PROVISIONS (Articles 1-4)

Finland has not succeeded in implementing the information and protection obligations of the Convention. The Parliamentary Ombudsman and the European Court of Human Rights have pointed out to Finland’s problems of monitoring the implementation of the legislation and the realization of legal protection which have not been solved by the State and which are also set aside in the initial report.  

A particular challenge in applying the existing laws is that there is no general definition of disability in Finland, but each substantive law has their own definitions in relation to each service or support measure. The Convention’s definition of disability has not taken root and a medicalized definition of disability still prevails.

In 2015, when adopting amendments to the Act on Special Care for Persons with Intellectual Disabilities (Act on Persons with Intellectual Disabilities), Parliament required the Government to continue to develop the regulation of self-determination (initial report, para 9). This legislative work is still ongoing. The amendments to the legislation on Non-discrimination (initial report, para 10) are also insufficient even after the 2015 and 2022 reforms: for example, failure to provide adequate basic level of accessibility is not included as a form of discrimination in the definition.

The 2018­–2019 Action Plan to promote the implementation of the Convention on the Rights of Persons with Disabilities (Initial report, para 15) was implemented only partially. The measures in the Action Plan, which is drawn up by the Advisory Board on the Rights of Persons with Disabilities (VANE) in cooperation with the ministries during each government term, have remained general in nature, with limited State commitment and practical implementation. Interdepartmental co-operation has not been achieved.

Reform of disability services legislation (initial report, para 21) has been delayed many times. The new Disability Services Act was finally adopted on 1 March 2023, but its actual implementation is threatened by the severe under-budgeting of disability services, starting already in 2016 in the over 300 municipalities. The under-budgeting seems to be continuing in the 21 welfare service counties and the city of Helsinki, larger regional units to take over from the municipalities the organizing of social and health care, emergency services in 2023.  

Consultation, inclusion, and participation of OPDs (initial report, paragraph 25) is still partly random, varies from one administrative sector to another, and is mainly carried out on disability-specific issues. A systematic disability impact assessment was only be included in the Impact Assessment Guidelines for the preparation of legislation in 2022[1]. It remains to be seen whether this will improve the involvement of persons with disabilities and their representative organizations in the preparation of legislation concerning them.

Municipal disability councils (Initial report, paragraph 26) have varying levels of operational resources and effective access to influence. This seems to be the case for disability councils in welfare service counties. A new risk has been identified, namely that attempts are being made to limit the direct involvement or inclusion of OPDs based on the existence of disability councils.

Proposed questions

What action will the Government be taking to:

1. complete the national legislation to strengthen the right to self-determination?
2. include the failure to provide accessibility in the Non-discrimination Act as a prohibited form of discrimination?
3. increase the knowledge and skills of public authorities and legal professionals about the Convention on the Rights of Persons with Disabilities?
4. improve disability policy objectives and implement measures across government periods?
5. systematically carry out disability impact assessments as part of the preparation and monitoring of legislation?
6. achieve more systematic, sustained, and effective inclusion and full participation of persons with disabilities and OPDs?
7. monitor and evaluate the implementation of the new Disability Services Act and, if necessary, revised in cooperation with OPDs?
8. monitor and evaluate the impact on persons with disabilities of the reform of the social welfare system and the transfer of responsibility for the organization of services to the welfare service counties and any shortcomings addressed?
   

PART II SPECIFIC PROVISIONS (Articles 5, 8-30)

Article 5 Equality and equal treatment

There is discrimination and a reluctance to improve the inclusion of persons with disabilities in Finnish society. More than 50% of respondents to the VFS felt that attitudes were poor, and 64% had experienced discrimination in some area of life.

Discrimination and discrimination at work are criminalized in the Criminal Code, and disability is a prohibited ground of discrimination in the Non-discrimination Act. Discrimination on the grounds of disability is commonplace, but these cases very seldom are taken to, or acted upon by the police or by the courts. According to a survey conducted by disability organizations, between 2016 and 2019, 59 cases of either employment discrimination or discrimination were heard by district courts, of these 59 only two were based on disability. During the same period, in decisions not to prosecute or to limit preliminary investigations, disability as a ground for discrimination appeared more frequently. In 54 decisions not to prosecute in cases of suspected discrimination and employment discrimination offences, 11 of the 54 decisions not to prosecute and 69 decisions to limit preliminary investigations included disability as a ground for discrimination. The initial report does not deal at all with discrimination from the perspective of criminal law and legal protection.

The obligation to make reasonable accommodations applies only to public authorities, education and training providers, employers and providers of goods and services under the Non-discrimination Act. For example, housing associations, associations and political parties are excluded from the scope of the Act. Very few – less than 2% – employers are covered by the equality plan mentioned in the initial report (for those employing minimum 30 people), as 98.3% of companies employ 20 or fewer people, according to Statistics Finland. Persons with disabilities continue to face discrimination both in leisure and in workplaces; one in three say they have experienced discrimination in the last five years at work or when looking for a job[2].

Proposed questions

What action will the Government be taking to:

1. the provision on reasonable accommodation in the Non-discrimination Act is extended to be compliant with the CRPD?
2. promote the use of positive discrimination, reasonable accommodation, and other measures to promote non-discrimination, including sanctions?
3. monitor the implementation of equality plans?

Article 8 Awareness raising

A third of respondents to the VFS felt that prejudice against persons with disabilities had increased and almost half felt that respect for persons with disabilities had decreased in the first years of the application of the Convention. 46% of respondents had experienced inhuman treatment and 69% had experienced degrading treatment. The entry into force of the Convention does not seem to have improved the situation of persons with disabilities.

The Non-Discrimination Ombudsman has also reported on the prevalence of inappropriate behavior, prejudice, and discrimination against persons with disabilities, which she sees as a reflection of negative attitudes and a lack of information and understanding^[3] : ”we treat persons with disabilities as if they were second-class citizens somewhere outside our everyday lives.”

Inadequate awareness-raising efforts and resources (paragraphs 45-50 of the initial report) make it difficult to implement the measures required by the Convention. There is a lack of awareness of the CRPD among ministries and other public administrations, and the initial report does not propose concrete measures to improve this awareness or the position of persons with disabilities in society. This work is left largely to the organizations, nevertheless Finnish Disability Forum receives no public funding for its work, apart from dedicated funding to Hilma – The Support Centre for Immigrant Persons with Disabilities and long-term Illnesses.

Proposed questions

What action will the Government be taking to:

1. provide more widespread and systematic information on the Convention on the Rights of Persons with Disabilities at different levels of society?
2. raising awareness of the Convention on the Rights of Persons with Disabilities among social and health services, early childhood education and training?
3. secure adequate resources for DPOs and the Finnish Disability Forum to be able to fulfill their role in CRPD implementation in accordance with CRPD 4 (3) and 33 (3)?

Article 9 Accessibility

Built environment

Up-to-date research data on accessibility of buildings is needed. The last survey on accessibility of residential buildings and courtyards was carried out in 2012^[4] , and only 15% of the housing stock is accessible.

Of the respondents to the VFS, 40% had encountered accessibility problems quite often or constantly (Table 1). The responses reflected the negative attitude of different stakeholders towards accessibility. In indoor public spaces, accessibility problems are often related to building entrances (level differences, missing or non-functional ramps), doors that are difficult to open and the dimensioning of lifts.  In public outdoor areas, the impossibility of access during snowy periods was highlighted by the lack of winter maintenance.

The Government Decree on Accessibility of Buildings (2017) came into force in 2018, applies to buildings and outdoor areas within their grounds, but not to the majority of outdoor public spaces. The regulation specifically addresses accessibility from the perspective of people with reduced mobility, but not, for example, accessibility of the sensory environment. The Decree does not provide sufficient guidance for the promotion of accessibility in the built environment. Also, the general provision regarding consideration of accessibility in the Land Use and Building Act, or the ministerial guidelines on accessibility are not sufficient to ensure accessibility outside the scope of the Decree. Responsibility for accessibility is spread across too many actors to sufficiently realize it in practice.

Public transport

The initial report (paragraph 64) refers to EU regulation on accessibility of public transport, but these regulations are focused on rights of passengers with reduced mobility, and as such do not guarantee accessible public transport. Public transport equipment and stops are largely inaccessible. Access to transport usually requires the assistance of another person and independent mobility is not possible. Drivers do not always provide assistance to disabled passengers to access the vehicle. Even in large cities, there has not been sufficient upgrading of bus stops, nor has there been sufficient provision of accessible transport for long-distance travel^[5].

The reform of taxi regulation (initial report paragraphs 65-69), especially market deregulation, caused severe disruption: shortcomings in distribution, safe vehicles, and driver skills. While it has been largely withdrawn, and legislation reintroduced, problems persist in subsidised, adapted, and accessible transport services. Continuing rounds of competitive tendering for transport is pushing down service prices. This has reached the point where access to the service for clients who rely on the service is increasingly compromised, particularly in rural areas. Journeys are being made excessively longer by obligatory pooling: This means that a 20-minute journey can take up to 1.5 hours due to combinations^[6]  of travel, making use of the service increasingly difficult.

Services

Persons with disabilities also need social welfare services other than disability services. However, the accessibility of services and the reasonable adjustments needed to facilitate their use are not ensured, even though, for example, research evidence shows that substance abuse services have a higher proportion of disabled clients than their share of the population^[7].

Schools and workplaces

37% of respondents to the VFS had experienced problems with accessibility or accessibility in the workplace and 45% in educational institutions. Attitudes were reflected in a lack of understanding of disability and misunderstandings in communication situations.

Accessibility challenges in workplaces and educational establishments include entrances, the absence or small size of lifts, the absence of induction loops and guide rails in passageways, the inaccessibility of toilets and the cramped working spaces for people using assistive devices. There are problems with information and social accessibility, such as support for interaction and communication.

Employers are not aware of the construction of an accessible environment and the support available for changes in working conditions. Disabled workers do not always know what kind of work support they would be entitled to.[8]

Accessibility of ICT

The initial report (paragraph 81) describes the assessment of website accessibility. Website operators can use the form published by the Regional State Administrative Agencies to report on the accessibility of their website^[9], and website users can report accessibility problems. However, the State does not carry out accessibility monitoring on a sufficiently large scale. The VFS (Table 2) identified problems with public services, with call-back systems. Many services are only available by telephone, which discriminates against people with hearing and speech impairments. Even the initial report (paragraph 79) states that all information should be available in both voice and text.

To access many essential services, strong electronic identification tools such as online banking credentials are needed, but these are not given to a disabled person in need of assistance to use the credentials. This is justified by the legal requirement to personalize the tokens. The 2017 amendment to the Credit Institutions Act was intended to facilitate access to online banking IDs for persons with disabilities. According to the explanatory memorandum of the Government Bill, banks must accept the use of an assistant for basic banking services, such as bank IDs, as a reasonable accommodation.[10] Yet it is very difficult for people with intellectual disabilities, for example to obtain online banking IDs. The Initial report completely ignores addressing the problem of unequal access to strong electronic identification tools (Article 12).

In addition to technical accessibility, cognitive accessibility, such as clarity and comprehensibility of language, must be taken into account. In 2015, only 10% of municipalities had produced materials in easy-to-read language (Initial report, paragraphs 280-281), even though there are around 750 000 people in Finland who benefit from easy-to-read language[11]. Ensuring accessibility of services is essential to prevent persons with disabilities from being excluded. However, access to digital services is either not sufficiently accessible or relies on the help of people close to them.

The introduction of the emergency text messaging service introduced in December 2017 in the emergency services requires strong authentication and periodic renewal of registration (Initial report, paragraph 98). SMS messages from an unregistered number will not reach the emergency call centre, which in the worst case could lead to the death of the person in need of help. The obligation to register is not due to be lifted until 2025. Contrary to the Initial report, the sign language emergency call pilot only started in June 2021[12] and will end in 2023. The service will only be open during office hours.

In Finland, even the major actors are not yet familiar with the principle of design for all. For example, the capital’s public transport ticket vending machine reform was carried out in the knowledge that it was unsuitable for persons with visual impairment. After the Equality and Non-discrimination Tribunal of Finland found the reform to be discriminatory, all visually impaired people were granted the right to free travel. A common electronic study system for the big four universities is not accessible for students with visual impairment. Accessibility testing was not carried out and it will take years to make the system accessible afterwards[13].

Proposed questions

What action will the Government take to:

1. clarify the current state and gaps in accessibility regulation from a fundamental and human rights perspective and improve the coherence of regulation?
2. ensure that the current state of accessibility of the built environment is assessed and reliable and accessible information on accessibility of facilities is available?
3. increase national regulation, use of design for all -principle and bring more clarity to the responsibilities for accessibility?
4. new and renovated buildings take greater account of the sensory, visual, and auditory environment?
5. mainstream accessibility and equality across all private and public service providers?
6. provide better information and training on accessibility and its regulation for building operators?
7. repeal the waivers of accessibility regulations for housing and reinstate the duty to stand and be on call that was removed from taxi drivers?
8. persons with disabilities are involved from the start in the planning, design and testing of services for accessibility and accessibility?
9. promote cognitive accessibility?
10. ensure ICT accessibility to emergency services?

Article 10 Right to life

Around 27% of respondents to the VFS had felt their right to life had been directly or indirectly challenged (Table 3), and around 50% for children with disabilities. Many had felt that their right to life on an equal basis with others was being challenged by poor access to services and support, negative attitudes from public authorities and the public debate on euthanasia and Do-not-resuscitate orders.

According to disability organizations, families of children with disabilities are often advised to limit treatment to resuscitation, intensive care, or life-sustaining treatments, for example. Restrictions are proposed and imposed on children with disabilities who are not in hospice care or near death. In residential care units, it may be suggested that a limitation of treatment be imposed, although the treatment guidelines must always be made by a doctor and based on up-to-date medical evidence. The Parliamentary Ombudsman has drawn the attention of the Helsinki and Uusimaa Hospital District to a guideline that restricted the right to (intensive) care for disabled children[14] .

In Finland, in practice, parents are advised to have antenatal screening and the risk of abnormalities or injury is presented as a reason to terminate the pregnancy. Sufficient support is not available if a family decides to keep the child despite a confirmed disability or structural abnormality during pregnancy.[15]

Proposed questions

What action will the Government be taking to:

1. ensure that disability is not used as a criterion for limiting treatment, and treatment limits do not violate the right to life or health services of persons with disabilities?
2. make unbiased information and support available during pregnancy and childbirth in case of suspected disabilities, illnesses, or abnormalities?

Article 11 Emergencies and humanitarian emergencies

In 2020, the Covid19 pandemic caused accessibility problems for persons with disabilities to information, service closures and illegal bans on visits, as well as questions about access to appropriate care. In the early stages of the pandemic, emergency information was not available in accessible and multilingual formats. The Ministry of the Interior has included sign language information in its guidelines for crisis situations (initial report, paragraph 100), but sign language interpretation was only provided for the live televised information sessions of the Council of State after reminders. Initially, subtitling was only available on the Internet, although the legislation has long required television subtitling.

During the pandemic, disability services were discontinued in several municipalities without any decision or any replacement services, due to the pandemic situation. The closure of day and work activities also caused income losses and livelihood problems.^[16] The Ministry of Social Affairs and Health had to remind municipalities that services must not be closed completely, even in exceptional circumstances, and that delays in services must not jeopardize everyday life and safety. Access to services must be ensured, especially for the most vulnerable^[17].

Visits to residential care units were banned on the grounds of health and safety of residents and staff, including vital physiotherapy, interpretation, and assistance services. Not all persons with disabilities had the equipment or skills to communicate remotely with their loved ones or to use online services. As the general restrictions were relaxed, absolute visiting bans could persist in residential services, and not all residents could even go outdoors. The Parliamentary Ombudsman ruled that categorical bans on visits were illegal^[18].

During the first wave of Covid, there was a public debate about whether persons with disabilities would be treated equally if there were a shortage of intensive care places.[19] A complaint was lodged with the Parliamentary Ombudsman against the prior limitation of ventilator treatment for a disabled person^[20] in violation of the Convention provision on the dignity of every life. In a pandemic situation, the service system was also unable to meet the service needs of children with disabilities and their families. Even essential services such as rehabilitation were suspended and in some families the education of the disabled child was left to the parents. In autumn 2020, a clear learning deficit was identified in many children[21].

The exceptional circumstances showed that the situation of persons with disabilities requires special consideration. The lack of legislation on self-determination also weakens the position of clients and patients in exceptional circumstances. Despite requests, the Ministry of the Interior has not engaged in cooperation with disability organizations to ensure that persons with disabilities are adequately taken into account in possible disruption, crisis and emergency situations. For example, there is a lack of information on how to evacuate persons with disabilities, how to consider the use of electronic aids in the event of a power cut, and how to ensure that public alarms reach people with hearing impairments. The initial report presents the provisions of the Emergency Preparedness Act, but it does not show how they are implemented and monitored.

Discussions with the authorities shift the responsibility to persons with disabilities themselves and to organizations, which cannot, however, replace the authorities in emergency situations. As a result of the interest rate crisis, there were large-scale redundancies in the largest national social and health organizations^[22], even though the need for information and support from organizations had increased even more.

Proposed questions

What action will the Government be taking to:

1. take into account and ensure the survival of persons with disabilities in times of disruption, crisis, and emergency?
2. make crisis information accessible, real-time, and equal for persons with disabilities?
3. ensure the continuity of services to maintain the functional capacity and life of persons with disabilities and to ensure equality of treatment in exceptional circumstances?
4. ensure that the education of children with disabilities is provided in exceptional circumstances in accordance with individual needs and without placing a burden on their carers?

Article 12 Equality before the law

The Finnish system of guardianship contains elements of decision-making on behalf of others, and the Guardianship Act regulating guardianship is not fully compatible with the obligations of Article 12. The law allows for the declaration of a person with a disability as an incapacitated person (Article 18), and income from property under the trustee’s care is directed only to an account declared by the trustee (Article 31). In practice, this significantly restricts the right of a person with disability to manage his/her/their property, even if the person is not incapacitated.

The rights under Article 12 are also hindered by the difficulty for persons with disabilities to access strong electronic identification tools when they need the assistance of another person to use them (Article 9). Strong electronic identification is required in several situations to exercise legal capacity. Difficulties in accessing identification tools often lead to the need for a person with a disability to seek the assistance of a guardian when there would otherwise be no need.

Supported decision-making

According to the initial report (paragraph 114), the reform of the Disability Services Act and the legislation on self-determination will take into account supported decision-making. No progress has been made in the reform of self-determination legislation for persons with disabilities over several government periods. The new Disability Services Act includes a supported decision-making service, to which a person is entitled if they need support to make important decisions about their own life, other than those that are part of their daily life. The provision states that the disabled person’s own views ”shall be taken into account” when assessing the significance of a decision, i.e., the disabled person is not entirely free to determine what is a significant decision for him/her/them. It is uncertain whether the regulation ensures that persons with disabilities can exercise their legal capacity equally in all aspects of life according to their will and wishes and are supported to do so as required by Article 12.

Proposed questions

What action will the Government be taking to:

1. ensure that the content and application of the Guardianship Act are in no way incompatible with Article 12?
2. ensure that the right of a person with a disability to reasonable accommodation, including the use of an assistant, is effectively allowed in use of strong electronic identification and this is raised to the text of the law?
3. promote the use of supported decision-making at different levels of society?

Article 13 Access to justice

According to the survey by disability organizations, during the first years when the Convention was in force as national law (2016-2018), 359 disability service cases were decided by the Supreme Administrative Court, of which the Convention was mentioned in only eight decisions or in their reasoning, usually with a brief statement that the decision issued did not conflict with the obligations of the Convention. This suggests that the Convention is still not sufficiently known or applied in courts or by public authorities. In addition, decisions by public officials and appeals procedures often set aside the rights under the CRPD by stating that national law, or even only the municipality’s own implementing guidelines, have been applied. This has also been noted by the Non-Discrimination Ombudsman[23] and the Parliamentary Ombudsman[24] in their reports.

Too often, decisions concerning disability services need to be taken to appeals procedures, which take an unreasonably long time, even years. During this long process, the service is not available to the disabled person. By the end of the appeal process, and after the service has been granted, an old person with a disability or progressive long-term illness often has reduced functional capacity so that the services they have applied for are no longer adequate and appropriate, or they have already died. On the other hand, if a disabled child is deprived of the support the child needs for years because of the appeals process, the child’s development and independence will be severely hampered. Moreover, service providers do not always comply with administrative court decisions[25].

The first stage of the appeal process is to lodge a complaint against the decision of the official. Often, the official who has taken a negative decision or who has instructed the official to take a negative decision also prepares and presents a draft decision to the body responsible for the appeal. In this case, an independent and fair hearing is not ensured, and most appeals are rejected. From 2023 onwards, due to a legal flaw, it is possible that complaints will not even be dealt with by a separate body, but by an official, which will further jeopardize the legal protection of the customer. Many persons with disabilities do not have the time or the skills to draft a complaint or the necessary replies to the complaints procedure. Another problem for legal protection at the appeal stage is that, although legal advice may be available from the legal aid office, the actual legal adviser is not to appear as an agent until the appeal is taken to the administrative court.

According to a report by disability organizations, 6166 social and health care complaints were heard by administrative courts in 2017. Before 2020, it was possible to appeal directly to the Supreme Administrative Court (KHO) against administrative court decisions on disability services guaranteed as a subjective right, but since 1 January 2020, appeals have only been possible if the KHO grants permission to appeal. Appeals are granted extremely rarely: in 2021, 134 applications for appeals concerning disability services were filed, four appeals were granted. In most cases, therefore, the administrative court is the only court hearing and deciding the case.

Legislation requires continuity of services in cases of permanent or long-term support needs. However, people with permanent disabilities or persons with disabilities from birth are often subject to time-limited decisions on service, which undermine legal certainty and unnecessarily drain resources from persons with disabilities, their organizations and the authorities that repeatedly process applications.

Staff shortages, staff turnover and skills shortages delay service decisions and lead to incorrect decisions, jeopardizing clients’ legal protection and access to services. The Parliamentary Ombudsman has repeatedly warned public authorities about exceeding deadlines for assessing service needs and delays in service decisions.

Municipalities are using their own internal guidelines to restrict customers’ legal rights to services[26]. The service provider determines the details of the purchase or implementation of the service, and the services do not respond to individual needs. Individualized provision is particularly compromised when a person with a disability is unable to express his/her/their own needs due to cognitive, communication or social interaction challenges and does not receive the support the person needs to communicate.

Public authorities are failing in their legal duty to provide advice, and customers are not always adequately informed about services, in their own language or using their means of communication. As a result, customers may often fail to apply for a service to which they are entitled. Services guaranteed as a subjective right under the Disability Services Act are also provided to clients based on general legislation, contrary to the rights and interests of the client (client charges, discretionary award)[27].

Disability organizations fill gaps in services by providing legal advice and assistance with appeals processes. However, not all organizations can provide this service due to limited operational funding and many organizations do not have a nationwide service.

Proposed questions

What action will the Government be taking to:

1. ensure that the duration of the appeal process is significantly reduced?
2. ensure that service providers comply with and implement administrative court decisions?
3. abolish the obligation to first acquire leave to appeal against administrative court decisions on disability services, which are protected as subjective rights, and speeding up the processing of appeals on other disability services? 
4. extend the possibility to lodge a complaint or appeal to situations where the authority delays in taking a decision?
5. compensate the person with disabilities for delays in the administrative procedure in the same way as for delays in the administrative process?
6. ensure that disability services legislation is interpreted in a fundamental rights-friendly way and service providers do not set aside the legislation with their own application guidelines?

Article 14 Freedom and security of the person

Since the ratification of the CRPD, there has been no systematic assessment of the compatibility with Article 14 CRPD of the provisions on restrictive measures in the Act on Persons with Intellectual Disabilities and its application, although this would be justified in the light of the anomalies identified by the monitoring authority. According to reports by the authority responsible for monitoring the strengthening of the right to self-determination and the use of restrictive measures in residential and institutional special care services (Valvira)[28] , the use of restrictive measures has increased, particularly in private services. Scarce human resources and lack of staff skills may also increase the use of restraint measures. In Finland, the construction of housing units with at least 15 clients is favored, although the large size of the unit seems to increase the use of restraint measures.

According to Valvira, decisions on restraint measures are taken by persons who are not competent to do so, and legal written decisions are neglected. Restrictive measures against a person’s liberty are sometimes used more than the time limits set for them, and there are also restrictive measures that are completely unlawful[29] .

According to the Act on Persons with Intellectual Disabilities, the use of restraint measures is conditional on the social welfare service unit having sufficient medical, psychological, and social work expertise to provide and monitor the necessary care and support (paragraphs 133, 134 of the initial report). In 2019, a quarter of the units did not have a specialist team[30] , as required by law, although the law requires the specialist team to know the unit and its residents.

Children are subject to the same provisions as the adults, and the law also allows for severe restrictive measures to be taken against children under the conditions laid down, which is very problematic for the realization of the rights of the child.

The provisions on restraint measures are intended to remain in force only temporarily until the new social and health care self-determination legislation is enacted. It has been set aside over several government periods. Preparations are ongoing; so far there has been little involvement of disability organizations representing different groups of persons with disabilities. There is uncertainty among organizations about the direction in which the legislation is being developed and whether the scope of restrictive measures is being extended to the detriment of the rights of persons with disabilities.

The Parliamentary Ombudsman has drawn attention to accessibility and equal opportunities for disabled prisoners to participate in the prison system during his inspections (initial report, paragraph 148). Inspections have found that the placement of inmates in inmates’ cells has prevented them from participating in activities or has resulted in conditions that are more closed and isolated than required for order and safety.[31] There are areas in prisons that are completely unsuitable for people with mobility aids, and there are no induction loops for people with hearing impairments.[32] Accessibility deficiencies also affect the implementation of proximity meetings if the visitor needs accessibility.

According to the findings of the inspection, a prisoner with reduced mobility or activity may be transferred to a prison hospital if the person cannot cope in the prison environment with the help of prison staff.[33] The assistance and support and reasonable accommodation required for the disability are not adequately provided in prisons. The initial report does not propose measures to address the shortcomings identified in the law enforcement.

Proposed questions

What action will the Government be taking to:

1. strengthen self-determination, reducing the use of restrictive measures and taking children and young people into account in self-determination legislation?
2. end the unlawful use of restrictive measures, against people with intellectual disabilities and people with autism spectrum disorders, in particular?
3. provide adequate resources for monitoring services and ensuring the real effectiveness of inspection visits?
4. improve accessibility of prisons and equal opportunities for disabled prisoners?

Article 15 Freedom from torture or cruel, inhuman, or degrading treatment or punishment

Cases of blatant violations of the human rights of persons with intellectual disabilities and autism, especially children and young people, in the context of services are regularly brought to the public’s attention. Cases of abuse include over-medication, isolation, starvation, restraint, abuse, restriction of movement and restriction of contact with loved ones.[34]  Abuse may have gone on for years before being discovered.[35] Psychotropic drugs are prescribed to persons with autism and persons with intellectual disabilities in need of intensive support to control behavioral problems,[36] which is ethically and legally unacceptable and contrary to the current national care guidelines for Autism Spectrum.

The most striking examples of inhuman treatment in the VFS concerned punishments in group homes and unjustified restrictions on movement.  Some respondents reported that the staff of the housing unit refused to use speech support and substitution methods, which means total isolation from communication. The open responses in particular report degrading or belittling treatment.

The unlawful use of the restrictive measures provided for in the Act on Persons with Intellectual Disability (discussed in Article 14) may also lead to violations of the rights under Article 15.

Proposed questions

What action will the Government be taking to:

1. address inhuman and illegal treatment in housing, institutional care, and health care?

Article 16 Freedom from abuse, violence, and ill-treatment

Persons with disabilities are more likely than the general population to experience violence and abuse in their relationships and in the services which they use^[37]. Intimate partner violence is most often perpetrated by a current or former spouse or partner, sometimes also by a personal assistant or a social or health care professional.

Between 27% and 43% of persons with disabilities fear being robbed or burglarized, and around 10% often avoid certain streets or areas for fear of violence^[38]. Comprehensive statistics on persons with disabilities who have experienced violence are lacking.

More than 15% of respondents to the VFS had experienced physical violence and almost 60% had experienced psychological violence (Table 4). Almost 10% had been victims of sexual violence, abuse, or maltreatment. Almost 25% had experienced other forms of abuse and over 60% had felt unsafe. The open responses to the questionnaire are particularly indicative of experiences of psychological violence and threats of physical violence.

Children and young persons with disabilities experience significant levels of violence, reported as early as four years old (Article 7). Violence against boys and men with disabilities is still not recognized as a separate problem, although they are often subjected to violence, particularly psychological and physical violence, both intimate partner violence and violence perpetrated by strangers. Intellectual disability can also increase men’s risk of experiencing intimate partner violence, and studies show that men also find it difficult to seek and receive help in situations of violence^[39].

Disability can make it difficult to seek help. The vulnerability of persons with disabilities is increased by their dependence on the help of another person and their inability to protect themselves from violence, as well as by their invisibility and the minimization of their experiences. Being subjected to physical touch and treatment makes it difficult to recognize the limits of one’s own body and may limit the ability to protect oneself. Up to 28% do not report their experience of violence, only around 50% felt they had received help from the authorities and around 40% felt it was easy to get help. Accessibility and ICT accessibility were perceived as barriers to seeking help, while ignorance, difficulty in the process of seeking help and attitudes were perceived as barriers to receiving help.^[40] Violence against persons with disabilities remains hidden and is not sufficiently addressed by professionals. Police do not always take assaults on persons with disabilities seriously but blame the disabled person and interpret disability-related behavioral characteristics as something else, for example, intoxication.

The quality recommendations for shelter services give very little consideration to the specificities of violence against persons with disabilities. Access to shelters remains problematic, as the network of shelters is still sparse, across long distances[41]. Not all shelters are accessible (initial report, paragraph 172) and it may not be possible to contact a shelter except by telephone.

Proposed questions

What action will the Government be taking to:

1. systematically monitor data on violence against persons with disabilities?
2. train professionals in the different sectors on how to identify and intervene in cases of violence?
3. combat violence against boys and men with disabilities?
4. improve the accessibility of shelters and ensuring accessibility to 24-hour services for people with hearing, hearing-visual, and speech impairments?

Article 17 Protection of the integrity of the person

Almost 30% of respondents to the VFS said their personal integrity had been violated and almost 10% had experienced violations often or quite often (Table 5).

Disability organizations are becoming increasingly aware of cases of social workers pressuring persons with intellectual disabilities and persons with similar support needs to terminate their pregnancy or use contraception, such as subcutaneous contraceptive capsules. The desire of persons with disabilities to have children is also being questioned on the grounds of their disability.

The importance of gender sensitivity for persons with disabilities is not always understood. Women living in housing units have problems with the lack of a same-sex assistant for intimate personal hygiene, despite requests. According to a 2019 ruling by the Deputy Chancellor of Justice[42] , the disabled person’s wishes regarding the gender of the assisting person must be respected and privacy and self-determination must be safeguarded in assisting situations: ”[i]t is contrary to fundamental and human rights that disabled persons do not have the possibility to influence who assists them in personal hygiene situations.” 

Proposed questions

What action will the Government be taking to:

1. ensure that the physical and mental integrity of persons with disabilities is protected in all situations, including as users of services?
2. ensure that the privacy and autonomy of persons with disabilities are respected in assistance situations?
3. ensure persons with disabilities are not pressured to terminate their pregnancy or use contraception?

Article 18 Freedom of movement and nationality

The freedom to choose where to live (initial report, paragraph 191) is still limited for persons with disabilities by the fact that housing that meets their individual needs is not always available in their municipality of origin.

The support to vulnerable disabled asylum seekers to ensure their rights and obligations in the asylum procedure (initial report, paragraph 151) is not specified in the initial report.

An exception to the language proficiency requirement for receiving Finnish nationality must be made if the applicant is unable to meet the requirement because of his/her/their health condition or sensory or speech impairment (initial report, paragraph 190). However, the derogation criterion is applied more strictly than is required by law; not taking account of the fact that, even if a person does not have a learning disability, the disability may still significantly impede and slow down language learning (for example, practice in social situations).

The cost of applying for citizenship (€460-690 per application) is prohibitive, especially for a disabled person on pension. A person applying for a derogation from the language requirement may have to apply for citizenship and pay the fees several times. Persons with disabilities who are inactive and therefore not in integration training will also have to obtain a language assessment for a fee (€160).

Disability services are not equally available to persons with disabilities who move to the country. For example, the person is only entitled to an interpretation service for persons with disabilities through Social Insurance Institution (Kela) when they have a municipality of residence in Finland and a functional form of communication.

Proposed questions

What action will the Government be taking so:

1. persons with disabilities are not forced to relocate involuntarily in the absence of a suitable housing solution?
2. the derogation from the nationality language requirement on grounds of health or disability is not interpreted more strictly than the law?
3. application and certification costs are not an obstacle to applying for citizenship?
4. the services necessary because of the disability will be made available to a disabled person before becoming a resident?

Article 19 Living independently and being included in the community

Housing choices

In the absence of appropriate support services, living with a family is often not possible for persons with disabilities, even for children and young persons with disabilities, who need  intensive support.[43] There are difficulties in coordinating housing services with other services (home care, personal assistance), and the provision of service housing in a person’s own home with personal assistance, which is a possibility allowed in the legislation, is not widely used[44].

Funding for housing for persons with disabilities is concentrated on the construction of group homes and housing units, which hinders the development of individual community-based housing solutions[45]. Most persons with disabilities who need help and support with their housing live in residential care units. 42% of the respondents to the VFS had not been able to choose their own housing arrangements. In the Aspa Foundation’s peer review of housing services, 33% of respondents had not been able to choose where they lived, 29% could not choose with whom they lived, and 25% felt that they did not have access to appropriate housing assistance and support.

There are particularly few housing options for people with intellectual disabilities, many of whom must live with their parents as adults (around 5,000 people in 2016). Despite the implementation of the Housing Programme for People with Intellectual Disabilities, institutionalization has been decreasing only slowly: 521 people were in long-term residential care for people with intellectual disabilities in 2018 and 403 in 2021. In particular, the long-term residential placement of children with intellectual disabilities in institutions has not been phased out in line with the targets set by the state (Figure 1).

Municipalities have a great deal of discretion in deciding on home adaptations and the provision and replacement of housing equipment under the Disability Services Act, and the views of the disabled person are often not taken into account in the decision-making process. This even affects the choice of accommodation, and, in the worst cases, the authority’s misjudgments jeopardize the safety of the person with disability in their home (e.g., inadequate smoke detectors, inadequate ramps).

General information on support services for independent living

The organization, accessibility, suitability, quality and functioning of services for independent living also raise many issues relating to legal certainty (Article 13). The lack of resources for services is a structural problem to be solved by administrative and political means.[46] In recent years, staffing levels have been improved in child protection and old people’s services, but not in disability services. The THL survey of municipalities highlights concerns about staffing levels in disability services, both in decision-making and in service delivery, particularly in housing services, but also in personal assistance and mobility services.[47] The cost neutrality sought by the new Disability Services Act does not increase the individualization of services (initial report, paragraph 241).

Responsibility for independent living services or support may also be left to relatives through a nominal family care allowance. This often results in an escalation of problems and ultimately the need for more burdensome services. In addition, for some groups at risk of missing out on disability services (e.g., persons with autism, persons who are neurodivergent, persons with brain injuries, persons with rare diseases) often leads to later use of more burdensome and expensive services (e.g., child protection placements[48], psychiatric institutional care[49]). The service system does not support the coordination of different services and there is no flexible cooperation between officials from different service sectors.

The systemic focus of housing support and institutional traditions[50] perpetuate practices that violate the fundamental and human rights of persons with disabilities. According to the VFS, the institutionalization of housing units limits the autonomy of persons with disabilities and their ability to influence their daily routine, daily life, and leisure activities, and increases the use of restrictive measures (Articles 12, 14 and 15). Similar problems have also been identified in the provision of home health services for ventilator users.[51] Housing inefficiencies and neglect are not mentioned for fear of backlash. The Covid19 pandemic added to the problems described above (Article 11)[52].

The autonomy and self-determination of persons with disabilities is supported mainly when it does not require human resources or conflict with the rules and principles of the service units[53]. Inadequate human resources and lack of staff skills are barriers to self-determination, especially in residential services for people with the “most severe intellectual disabilities”[54], where self-determination would require the support of another person.

Personal assistance

The initial report (paragraphs 216-227) does not sufficiently describe the serious shortcomings in the implementation of personal assistance. 39% of the respondents to the VFS report problems. For example, the granting of personal assistance often sets aside the overall individual situation of the client and the actual need for assistance due to the disability. In practice, even where a service is provided, persons with disabilities do not always receive the assistance they need. For example, the service provider or organizer may severely restrict where, how, and when personal assistance is used, thus failing to meet the requirements of personal assistance in accordance with the criteria set in the general comment on Article 19.

In 2016, 35% of municipalities reported at least some difficulty in organizing personal assistance, that rose to 55% in 2019.[55] The problems include the implementation of the decision, the way the service is organized, the adequacy of the amount of assistance and the complexity of the system. The Parliamentary Ombudsman has called for the adequacy of the value of the personal assistance service voucher to be reviewed when costs rise and, if necessary, in other cases[56] .

The current Disability Services Act makes it a condition for the granting of personal assistance that the person with a disability has the resources to determine the content of the assistance and how it is provided. As noted by the CRPD Committee[57] , this practice has led to discrimination against people with cognitive disabilities because they need support in their decision-making. According to the Committee, control over the service should be exercised through supported decision-making[58], but this is not always allowed in the implementing practice, and therefore the practice has not been fully in line with the CRPD. The new Disability Services Act has slightly relaxed the requirement (the person is capable, independently or with support, of forming and expressing a will as to the content of the assistance) and added a similar new service of special inclusion support for persons who do not qualify for personal assistance.

The initial report (paragraphs 222-223) mentions the insufficient number of hours of personal assistance, yet it does not explain the reasons. The assessment of the number of hours is limited to maintaining basic activities of daily living (ADL) and does not take sufficiently into account equal inclusion or full participation in society. 43% of respondents in the VFS who need personal assistance say that the number of hours of personal assistance is too low and is mainly sufficient for the most essential activities. Even for day-to-day activities, the necessary number of hours of assistance is often not allocated and persons with disabilities are forced to choose between different essential assistance needs. The number of assistance hours has decreased between 2010 and 2019 (Figure 2), although the need for personal assistance has not decreased. Decisions on assistance are often made on the assumption that family members will also provide support.

The legal minimum of 30 hours/month of personal assistance for leisure and hobbies has become a de facto maximum; excess hours require justifications to an unreasonable extent. Decisions below the minimum number of hours are also taken on the basis that the person is using housing services and allegedly receiving leisure assistance from the housing staff. However, as a rule, housing service contracts do not cover individual assistance for hobbies or maintaining social relationships. Many persons with disabilities do not receive any such assistance at all. Thus, what is described in paragraphs 217 and 218 of the Initial report is not translated into practice in the daily lives of persons with disabilities.

Application of Act on Public Procurement to disability services

The Act on Public Procurement and Concession Contracts (paragraph 214 of the initial report) applies to the provision of social and health services when the service provider decides to outsource the provision of services. In a tendering procedure, only the commissioner and the service provider are involved, leaving persons with disabilities behind with little involvement, influence and legal protection in matters concerning them. Competitive tendering has led, for example, to forced displacement or loss of education and employment (competitive tendering for interpretation services, Article 26). Competitive tendering has often had significant consequences for the ability and well-being of persons with disabilities: for example, the reduction in human resources in housing services through competitive tendering has reduced the quality of work and increased the use of restraint measures (Article 15). According to the Non-Discrimination Ombudsman, the way in which services for persons with disabilities with a life-limiting condition, such as housing, are procured should not be left to the discretion of municipalities and Kela^[59] : ”The often relatively short contract periods and changes of service provider involved in public procurement can bring considerable uncertainty to the life of a person who depends on individualized services every day.” 

In 2018, disability organizations submitted a citizens’ initiative to Parliament to exempt services for persons with disabilities from the scope of the Public Procurement Act. Parliament rejected the request. However, an Inclusion Working Group was set up to prepare a proposal for legislation to strengthen customer participation in social care processes. This work, mainly carried out by OPDs, seems to have been largely in vain: the proposed legislation has been implemented to a limited extent only.

Proposed questions

What action will the Government be taking to:

1. ensure the right of persons with disabilities to choose where they live, and with whom they live?
2. ensure sufficient, competent, and permanent staff in residential services?
3. overcome the institutionalization of residential care and the use of restraint measures due to the lack of residential care?
4. ensure the application of personal assistance under the new Disability Services Act is in line with the Convention and the Committee’s recommendations to Finland and does not exclude people who act as employers with supported decision making from the service?
5. ensure the number of hours of personal assistance is sufficient to meet the needs of the disabled person?
6. ensure personal assistance is fully in line with Article 19 and the general comment?
7. ensure the suitability of personal assistants for the sector?
8. promote inclusive service provision for persons with disabilities?
9. improve the ability of social services authorities to better identify and understand the impact of different disabilities and impairments on a person’s daily life?
10. provide specialized training in social work for persons with disabilities equivalent to other areas of social work?
11. ensure services for persons with disabilities are effective and based on individual needs?  
12. ensure coordination of disability services, multidisciplinary cooperation, and the necessary expertise?
13. ensure adequate resourcing and staffing of services for persons with disabilities?

Article 20 Personal mobility

Inadequate mobility support jeopardizes the equal inclusion of persons with disabilities in all areas of life. The 2018 reform of taxi legislation significantly reduced the regional and temporal accessibility of transport services. The needs of persons with disabilities were not taken into account in the preparation of the reform. Of those in special categories who need accessible transport, 78% considered the change to be very or fairly bad, and 37% considered taxi access to be poor or very poor. The reform reduced equality^[60], and some people lost the confidence to travel by taxi^[61].

Transport services are the largest disability service in terms of number of users, with around 90 400 in 2019.^[62] Transport service practices vary widely between municipalities and regions, and centralized transport referral systems do not take sufficiently into account individual needs. Inappropriate arrangements can prevent access to essential services altogether. Difficulties in the organization, quality and functioning of transport services have also increased since 2016, according to municipalities (Figure 3).[63] Services are unavailable, waiting times are long, and transport services do not meet the needs of customers. Legal changes were seen as adding to the difficulties.

The effects of the taxi reform are still being felt. In transport services, the professionalism and specialized skills of drivers have deteriorated, and tenders do not require any more the necessary professional skills. Service providers are not fulfilling their specific obligation to provide personalized transport services in line with customer needs. Procurement prices and contract terms do not sufficiently guarantee the right of clients to receive the service, and sanctions in procurement contracts for non-compliance by service providers are either inadequate or not used. Taxis increasingly fail to respond to orders they consider unprofitable.

41% of respondents to the VFS felt that transport services are not organized in a way that suits them and that they do not receive enough service. For example, some must choose whether to use their limited trips to go shopping, to visit relatives or to take care of their children. Those under 16 and their families were less satisfied with transport services.

Also, according to the Advisory Board for the Rights of Persons with Disabilities (VANE) survey^[64] , 77% of respondents felt that the possibility of independent personal mobility for persons with disabilities is poor or rather poor. 

According to the law, the amount of transport services must correspond to the individual need, but in practice individual discretion is not used and the minimum (18 one-way trips/month) has become the maximum. A disabled person can leave and return home 9 times a month with the help of transport services. The initial report (paragraph 246) does not sufficiently take into account the individual consideration of mobility needs, rather it refers to the average number of trips and misleadingly implies that on average trips are needed to an extent that is much below the minimum number. However, persons with disabilities are a heterogeneous group with varying life circumstances, and mobility needs, as they do for non-disabled persons. In a large, sparsely populated country, place of residence has a major impact: public transport is mainly available in large cities, and only partially accessible.

For a person with a disability who needs transport services, the functionality of transport services is an essential prerequisite for carrying out daily activities and living independently. Public authorities have a responsibility to provide transport services.

Proposed questions

What action will the Government be taking to:

1. ensure the availability, reliability, safety, and driver skills of transport services?
2. ensure that the legal minimum is not used as a maximum, and individual mobility needs are taken into account?
3. ensure that transport services are guaranteed equally throughout the country, in both urban and rural areas?
4. What will the Government do to ensure that the personal mobility schemes do provide financial support for the purchase of a car, including an electric car or other means of transport, for persons with disabilities?

Article 21 Freedom of expression and opinion and access to information

Linguistic rights are the basis for realizing the rights of persons with disabilities. The official languages of Finland are Finnish and Swedish (Initial report, paragraph 257). The Constitution also provides for linguistic and cultural rights for Sami, Roma, and sign language users, and for the rights of persons who need interpretation services because of disability to be protected by law.

According to the VFS, linguistic or communication rights are not practiced as required by law for persons with disabilities. In the administrative sectors of social services, health and police, linguistic rights are often poorly implemented and there are large geographical disparities.^[65] Public authorities do not always serve customers in the language they use and documents, information or requests for opinions are not always translated into Swedish. There are also problems with digital services. According to the Chancellor of Justice’s Office, the Swedish language is disappearing from the administration and public authorities[66]. The situation has not improved despite legislative changes in recent years.

Two national sign languages are used in Finland, Finnish and Finnish-Swedish, the latter of which is classified by UNESCO as seriously endangered (less than 100 users). Despite government efforts to revitalize the language (initial report, paragraph 266), a deaf person who is deaf in Finnish-Swedish often ends up using Finnish sign language, has access to an interpreter who speaks only Finnish, and thus has to deal with matters in a language which is foreign to the person (Article 9).  In 2020, the first Sign Language Barometer^[67] showed the poor implementation of linguistic rights and interpretation services, to which the Non-Discrimination Ombudsman has also drawn attention^[68].

Experiencing discrimination in access to information and communication is common. 67% of sign language speakers who responded to the VFS do not feel that information is accessible, almost 60% do not know how to react in case of danger and more than 50% had experienced inappropriate treatment in terms of language rights. It is difficult to read and understand official language. This is most difficult for old deaf people, who have less written language skills[69].

There are around 65 000 people in Finland[70] with a speech disability who cannot cope with everyday life using speech. For people with a speech disability, linguistic rights mean the right to express themselves in the most appropriate language or means of communication and to receive information in a form that is accessible and understandable to them (Article 2). Severe speech impairment affects a person’s overall ability to function, leaving a major role for those close to them to support and enable communication.

Public authorities are not sufficiently aware of their obligation to communicate in an understandable way with customers with speech impairments and service providers or authorities do not make the necessary reasonable adjustments, such as allowing sufficient time for consultation. According to the VFS, poor availability of assistants makes participation difficult. Many people would already need an assistant to arrange an interpreter or transport service. People often talk past a person with a speech disability to an interpreter or an assistant.

The right of children with speech impairments to express their views or receive information in a way that suits them is downplayed or ignored. Children who communicate by non-verbal communication are particularly vulnerable. Even at school, teachers do not always have adequate communication skills and children rarely have the support of an interpreter and a helper at the same time.  

In the initial report (paragraphs 273-278), the most important service that promotes social equality and inclusion of people with hearing, hearing-visual and speech disabilities in practice, the Kela interpretation service, is described only in terms of its content and annual costs, not its practical implementation.

Although interpretation is a subjective right and there are no age limits in the law, young children are not usually entitled to interpretation. The Supreme Administrative Court, the highest domestic instance of appeal, has ruled, without assessing individual need, that children under the age of 1 do not have a functional form of communication within the meaning of the law and are therefore not entitled to interpretation service[71].

Around half of the respondents to the VFS experience problems with interpretation services quite often or constantly. Only around 2% of people with speech disabilities use interpretation services: not enough is known about them. It takes time to find a suitable interpreter and the only reliable interpreter they know may no longer be available after a round of competitive tendering[72].

The Non-Discrimination Ombudsman is often contacted about problems related to the inefficiency or quality of Kela’s interpretation services. The National Non-Discrimination and Equality Tribunal has issued several decisions and conditional fines to Kela in relation to the inefficiency of the interpretation service and setting aside of individual needs[73]. However, there has been no significant improvement.

Proposed questions

What action will the Government be taking to:

1. ensure that the linguistic rights of persons with disabilities are implemented in law and on an equal basis throughout the country?
2. ensure that the linguistic rights of persons with disabilities and the need to use easy-to-read language are taken into account in the design and development of services? 
3. ensure that persons with speech impairments given enough time to communicate with the authorities?
4. improve access, responsiveness, and provision of interpretation services to all persons with disabilities who need them?

Article 22 Respect for privacy

According to the VFS, respect for the privacy (honor and domestic peace) of persons with disabilities, as guaranteed by the Convention and the Finnish Constitution, is often not sufficiently respected in housing services (initial report, paragraph 283).

According to the VFS, documents containing clients’ confidential information are not always handled properly in housing units, and mail may be opened and read without permission. Clients’ rooms are entered without knocking, and there are several housing units where residents do not have keys to their homes.

Methods that unnecessarily intrude on privacy have become more common in the assessment of disability services. The client’s perception of their service needs is set aside, and the assessment is unnecessarily extended through the use of mandatory, privacy-invasive indicators (e.g., RAI). All broad questions on the indicators are required to be answered, even if some of them are not relevant to the assessment of the person’s service needs (e.g., sexuality, substance use, mental health). Although the use of the indicators to assess the service needs of persons with disabilities is not based on the law, the State has not intervened to extend the use of the indicators to persons for whom they are not intended. Disability organizations’ concerns about inappropriate use of the scales have not been heard, and the question set for the scales is confidential due to its licensing[74].

External assessors may come to a disabled person’s home for up to many weeks to assess and monitor the person’s life. Clients are afraid to refuse for fear that refusal will affect service decisions. Although the individual needs of the service recipient must be assessed in their own environment, the assessment must not be carried out in such a way that violates privacy.

The measurement and evaluation practices seem to be based on the suspicion that the client is seeking services without justification. This assumption is supported by the fact that there is a recurrent requirement to re-prove permanent disability and service need, for example, a disabled person who is permanently employed must periodically provide proof of employment to disability services for the purpose of work-related assistance and travel.

Proposed questions

What action will the Government be taking to:

1. ensure that respect for the privacy of persons with disabilities is reinforced at all stages of the service process?
2. develop methods for assessing service needs in cooperation with disability organizations, considering privacy and data protection?
3. ensure that customer information is not collected unnecessarily, and the customer has effective legal remedies to prevent the unlawful collection of information?

Article 23 Respect for home and family

Problems related to respect for the home and family are evident in housing services. Despite the requirements on quality of housing[75] , housing units still use double rooms for clients, and there are also flats where it is not possible to move in with another person. Night guests are not allowed in all housing units.

Although children and young persons with disabilities have equal rights to family life, there are not enough housing support services to enable them to live in their own family homes.

Children with disabilities become clients of child protection services and neurodiverse children (with autism, ADHD, Tourette’s, developmental language disorder) are at high risk of being placed outside the home^[76], because the services and supports available for the children and their families are not realized. This causes human suffering for families and is costly to society. The number of children in foster care has been rising in Finland for 30 years, and according to the Ombudsman for Children, ”the continuing increase in the number of children and young people in foster care can be seen as the biggest failure of child policy in recent years”^[77]. There has been no decrease in the institutionalization of children with intellectual disabilities (Article 19). Placements are made, for example, due to family exhaustion, although the actual reason is that children and families do not receive support services in time to meet their individual needs.

According to the VFS, women with disabilities experience unequal treatment in health care in relation to parenting, family planning and child custody (Article 6). In family planning, a mother’s disability is automatically seen as something against the best interests of the child, and a disabled woman’s ability to have a relationship and motherhood is also doubted by those close to her.

Proposed questions

What action will the Government be taking to:

1. ensure the equal rights of persons with disabilities, in particular children with disabilities, to family life and to live with their own family?
2. ensure that housing services allow the disabled person to find housing solutions in line with their own family concept?
3. ensure that parenting of persons with disabilities is supported and not questioned based on disability?

Article 24 Education

In the Finnish education system, the understanding and implementation of inclusion have been left halfway^[78], and the support measures, financial and human resources required by the principle of inclusion are not sufficiently implemented at present. The report of the Ministry of Education and Culture contains development proposals for legislation, curriculum criteria, information guidance and multidisciplinary cooperation to strengthen inclusive early childhood education and pre-primary and primary education^[79]. 

Early childhood education and care

Access to early childhood education services and support varies by region, municipality, and age group. Structural support (hiring additional staff or assistants, reducing the size of groups) does not meet children’s needs.^[80] Legislation does not ensure adequate access to sign language for children whose mother tongue is sign language. In 2022, when the Early Childhood Education Act was reformed to support children’s development, learning and well-being, three levels -general, intensified, and special support- were added. However, the content of these forms of support is not defined in a precise and binding way.

Primary education

An increasing number of pupils with special educational needs have moved from a special school to a local school. In 2021, 6% of pupils with special educational needs were taught entirely in a special school^[81] , and 27% in a special group or class in a local school. However, the strong support provided in special schools is not always transferred with pupils to their local school. Principals, teachers^[82] and parents need more resources to implement this support. Regional and municipal differences in access to support are large^[83].

According to parents of children with disabilities who responded to the VF school survey, support in the local school and especially in general education classes and groups varies and often inadequate (Figure 4)^[84].  Around 40% of parents feel that the support their child receives is not sufficient, timely and does not meet the child’s individual needs. It is difficult to get help for extra-curricular activities (e.g., recess, meals). The low number and high turnover of school counsellors and the lack of personal counsellors/assistants undermine the delivery of support. Teachers and school counsellors are perceived as lacking skills to support the learning of pupils with disabilities in different ways. Large group sizes and lack of small group places and special classes make it difficult for children with disabilities to attend school and learn. In practice, support is not always provided in accordance with the plans as recorded. Children also continue to be placed in special schools or groups, even when they could manage in a local school or mainstream class with adequate support.

Long application and appeal processes, which can take years, are a burden for some families. The greatest challenges in accessing support for learning and schooling were faced by children with neurodiversity, some of whom had experienced significant delays in accessing the support they needed and had experienced a range of deterioration in their well-being. As problems escalated, truancy or challenging behavior may have developed, which the school tried to address, for example through child protection referrals. For some pupils, the lack of support in mainstream education led to attempts to provide support by transferring them to a special class.

The VF school survey highlighted overcrowding and noise in school premises. Around half of parents felt that their children were unable to concentrate in the school, and that the facilities were sensory deprived. More than a third of respondents felt that there were shortcomings in the accessibility of the facilities.

In primary schools, supervision has focused on self-supervision by the education provider, often supplemented by legal supervision initiated by the guardian. Monitoring is inadequate, especially to safeguard the rights of the most vulnerable pupils^[85]. No administrative decision on intensified support is taken, which could be challenged on appeal; this lack of legal recourse undermines the legal protection of pupils with disabilities.

The legislative update on sign language^[86] (initial report, para 312) has not been implemented. Deaf children are not always provided with sign language home education by disability services, and the poor implementation of family support is reflected in children’s language skills.^[87] In primary education, deaf teachers are rarely recruited, which can be interpreted as discrimination in line with UN General Comment No 6, paragraph 65.

Secondary and higher education

Educational support does not continue in a coherent way from primary to secondary school, as the support needed by a young person with a disability may be lost in the transition phase. Specialized vocational schools do not exist everywhere in Finland and offer students a limited range of fields of study. There are not enough preparatory studies for students with disabilities, especially for those with the most intense needs. The problem has been exacerbated since compulsory education was extended to the age of 18. 

There are no register-based statistics on disability among higher education students (Initial report, paragraph 331). Only 23% of people with a disability had completed a tertiary education (40% of the rest of the population). This may be partly explained by the guidance received: persons with disabilities are directed to study ’disability-friendly subjects’ and specialized institutions rather than being encouraged to pursue their own dreams.^[88] Study advisor is not sufficiently skilled to deal with disability and does not always consider the individual strengths and capacities of young persons with disabilities. For example, there is a lack of awareness that higher education may be more likely to lead to employment than vocational studies, which often require good physical abilities. Attitudes also play a role, with only 50% of students with special educational needs feeling equal to other students^[89].

Of the children and young people who responded to the VFS, 38% had experienced accessibility problems in public buildings and 34% in educational institutions. Accessibility has also influenced the choice of study place and thus the choice of career. The lack or unsuitability of assistive devices hinders the full learning experience of some students with disabilities and can lead to dropouts or dismissal from the school.

The new legislation on compulsory education has left young persons with disabilities inadequately supported and on their own to seek services (e.g., interpretation, personal assistance, transport). These support measures may not be implemented, limiting the freedom to apply and may lead to dropouts. The shortage of personal assistants exacerbates the situation. In addition, neurodiverse students without intellectual disabilities are often not provided with services under the Disability Services Act to support their studies.

Despite efforts to develop accessibility and inclusion in higher education^[90], support measures and reasonable adjustments under the Non-discrimination Act are not sufficiently and randomly implemented in higher education.

The Inapplicability solution SORA legislation aims to improve the safety of education and working life by giving education institutions more tools to deal with students’ unsuitability. The provisions apply to certain qualifications in the fields of education, such as social work, health and physical education, technology, and transport. Admission may be prevented by illness, disability or any other health-related condition which is an obstacle to participation in education or training or to the performance of practical tasks or training. In practice, the provisions may prevent persons with disabilities from studying in the field of their choice.^[91]

Proposed questions

What action will the Government be taking to:

1. support for learning, schooling and study is strengthened at all stages from early childhood to higher education?
2. ensure the effective implementation of the principle of inclusion and address the lack of resources, staff skills and support?
3. improve the legal protection of pupils?  
4. improve the accessibility of educational facilities, taking into account physical, social, developmental, visual, auditory and other sensory needs?
5. ensure accessibility of learning materials and digital services and devices used for learning?
6. ensure equal access to post-primary education for persons with disabilities at all levels of education and training?
7. SORA provisions do not prevent persons with disabilities from having equal access to the qualifications of their choice?
8. to safeguard sign language teaching resources and the right of children who use sign language to be taught by Deaf teachers?
9. to implement of the plan for more accessible higher education?

Article 25 Health

There is structural discrimination in healthcare. A lack of expertise on disability, accessibility and ICT accessibility problems hamper and even prevent access to care: appointment reservation and communication systems do not consider, for example, visual and hearing impairments and other sensory impairments. This lack of expertise is particularly evident for clients with multiple and rare disabilities and diseases, or neurodiversity, even though health professionals should be better trained than the general population to meet persons with disabilities and treat them in an equal and non-discriminatory way. Women and children with disabilities in particular experience inappropriate treatment in healthcare (Articles 6 and 7) and inaccessibility of examination equipment and facilities. This is also reflected in the complaints of discrimination received by the Non-Discrimination Ombudsman.[92] In the debate on euthanasia and Do-not-resuscitate orders (Articles 10 and 11), the right to life of persons with disabilities has been questioned, directly or indirectly, for example by refusing intensive care.

Proposed questions

What action will the Government be taking to:

1. improve the accessibility and ICT accessibility of healthcare facilities, access channels and examination equipment?
2. ensure that persons with disabilities have equal access to health services?

Article 26 Rehabilitation

The system of medical rehabilitation consists of several entities and rehabilitation is organized based on several laws. This leads to problems of interpretation, loopholes, and inequalities. Inadequate service guidance makes the situation more difficult. Persons with disabilities are not provided with sufficient access to demanding medical rehabilitation, and entitlement to rehabilitation is limited, for example according to age and diagnosis.

Around 80% of respondents to the VFS needed rehabilitation for their disability, but only over 50% felt that they had received it. Some people over 65 reported that they would not receive any rehabilitation at all, as this age group falls outside the scope of the demanding medical rehabilitation provided by Kela. The responsibility for rehabilitation is shifting to the public health care system, which is not really responding adequately to the rehabilitation needs of old persons with disabilities. Reduced rehabilitation services make it more difficult to maintain functional capacity. Adults with autism and neurodiversity often go completely without rehabilitation. The need for neuropsychiatric rehabilitation in children and adolescents is not adequately met[93].

The assistive technology system consists of several separate entities funded under different laws. The initial report (paragraphs 367-384) creates a picture of persons with disabilities receiving the appropriate aids to meet their needs. However, 23% of the respondents to the VFS had not received the mobility equipment they needed and more than 28% had not received other equipment they needed. There is no possibility to appeal against the decision on the non-provision of assistive devices^[94].

The regulatory guidance on assistive devices categorically classifies certain assistive devices (e.g., snow and pool chairs) as recreational devices that are not provided as medical rehabilitation aids based on individual need. The healthcare system fails to recognize the challenges and individual needs of people with rare diseases in their daily lives, which is reflected in the practice of dispensing assistive devices. Many persons with disabilities have had to purchase some or all their assistive devices themselves, even though they are free of charge under the law. The Parliamentary Ombudsman has found that the categorical lines of the guidelines for the provision of assistive devices are contrary to the law.^[95]

Maintenance and repair of assistive devices is also a problem, according to the VFS. Even the repair of essential mobility equipment takes an excessive amount of time. Assistance centers are only open on weekdays during the day and no service is available at other times. Long maintenance and replacement times for assistive devices are an obstacle to the realization of the rights of persons with disabilities. A person with a disability can be prevented from studying, working, moving around, and carrying out daily activities for weeks or even months while an assistive device is being serviced.

The Procurement Act also applies to the provision of rehabilitation services when a service provider outsources the provision of services. In tendering, quality has become less important: in 2018, tendering for medical rehabilitation services placed 80% emphasis on price and 20% on quality. As a result, around 3 500 people in need of rehabilitation had to change therapist and even settle for a therapist who did not have the necessary specialized skills.

Proposed questions

What action is the Government taking to:

1. improve the compatibility of the rehabilitation service system and preventing the exclusion from rehabilitation services?
2. ensure that rehabilitation is not categorically limited on the basis of age or diagnosis, or because rehabilitation cannot enhance independent functioning or work capacity?
3. remove categorical and limiting diagnoses (ME/CFS, EDS) from the classification of functional disorders?
4. improving flexibility in the maintenance and replacement of assistive devices and the availability of personalized assistive devices, including for leisure activities?
5. strengthen the legal protection of the user?
6. the regulation on assistive technology will be updated?
7. employment is the goal of rehabilitation processes from the start?
8. ensure that the application of procurement legislation does not undermine the quality of rehabilitation?

Article 27 Work and employment

Cases of disability-related discrimination at work are not brought to the attention of the labor inspectorate because it is difficult to prove discrimination. Disabled jobseekers or workers are not always aware of their rights and opportunities to influence the situation. It can feel burdensome to start a procedure and the fear of retaliation and of no benefit is also a barrier to filing a complaint.^[96] In 2017-2018, the Regional Administrative Office had around 200 cases of employment discrimination pending, of which only 9 concerned discrimination on grounds of disability.

According to Section 15 of the Non-discrimination Act, employers must make reasonable adjustments to persons with disabilities to ensure equality in individual situations. Refusal to provide reasonable accommodation constitutes discrimination under the Act.

57% of respondents to the VFS had experienced discrimination in accessing or applying for a job. Positive discrimination is rarely applied, and the necessary reasonable adjustments are not always put into practice. Many respondents felt that they were seen as a burden and a cost, rather than as active and productive members of society with the right to education, employment, and career advancement.

Another barrier to employment for persons with disabilities can be the reconciliation of earnings and disability pension. The project on the flexible matching of earned income and disability pension (linear model), which was worked on in 2019-2023, did not progress to the legislative stage. Taking even a short-term job delays the payment of unemployment benefits and makes it much more difficult to make ends meet.

Only about 3% of people with intellectual disabilities work in paid employment covered by collective agreements. Rehabilitative work activities, work activities or open employment rarely leads to real employment. Work activities are often a permanent form of employment for persons with disabilities, but the reform of the Social Welfare Act on work activities has not progressed.

For persons with intellectual disabilities and those who need similar support open employment is often the only option available. There are legal problems involved. It may meet the criteria of an employment relationship under the Employment Contracts Act, but as it is formally a social care service, the person does not receive a salary or any other employment protection or rights (protection against dismissal, annual leave). The transformation of open employment placement into a work placement of limited duration with the aim of gaining paid employment could remedy this situation.

The position of persons with disabilities in the labor market is also hampered by the difficulty of accessing personal assistance when the need for the service is related to cognitive assistance in the workplace. Data on work discrimination experienced by people with intellectual disabilities is not available.

There are no precise statistics on the employment rate of persons with disabilities overall. According to the Register of Visual Impairments, the employment rate for persons with visual impairments was 40% in 2018 and 41% in 2022 (72% for the total population). According to the Ministry of Employment and the Economy’s Customer Service Register, there were 30 172 partially disabled jobseekers in December 2019 and 29 337 in November 2022. The situation stays basically unchanged.

Entrepreneurship can allow persons with disabilities to have more flexible work arrangements and avoid the barriers to employment in the traditional labor market. Society benefits from the self-employment of persons with disabilities through increased tax revenues and reduced use of social benefits. However, the challenges of entrepreneurship for persons with disabilities include lack of experience, training and networking, access to finance, reconciliation of social benefits and business income, barriers in the business environment and a cautious attitude of entrepreneurship support services towards the entrepreneurial opportunities of persons with disabilities.[97]

Proposed questions

What action will the Government be taking to:

1. provide more information on employment of persons with disabilities, forms of employment support and reasonable accommodation for jobseekers, workers, and employers with disabilities?
2. provide the benefits and services (assistive devices, transport services, personal assistance) needed by a person with a disability for employment promptly and as necessary?
3. develop the working conditions adjustment aid to reflect reasonable accommodations under the Non-discrimination Act in today’s working life?
4. develop more flexibility in working life to take account of the worker’s own or a close relative’s disability?
5. make better use of positive discrimination in working life?
6. ensure accessibility and accessibility of working environments?
7. mobilize the public sector to employ persons with disabilities?
8. allow for more flexibility in the reconciliation of earned income and disability pension?
9. support entrepreneurship for persons with disabilities?

Article 28 Adequate standard of living and social security

Many persons with disabilities receive the main part of their income from disability pensions or other social benefits. The complexity of the benefit system excludes persons with disabilities, especially the most vulnerable ones. Public authorities are also not aware of all the benefits and services available to their clients. Lack of adequate advice and guidance leads to exclusion and poverty. Finland has been repeatedly criticized by the Council of Europe for having too low a level of social protection[98].

Except for disability benefits[99], it is difficult to reconcile benefits with occasional employment or self-employment income. This creates incentive traps that make short-term work risky and delay the payment of unemployment benefits. Employment income has a strong impact on housing benefit. Being self-employed full-time completely disqualifies a person from unemployment benefit, regardless of the entrepreneur’s income.

There is a lack of consideration of the costs of disability in decision-making when granting the care allowance or disability allowance. The administrative transfer of the income support to Kela has worsened the reimbursement of costs also through income support. [100]

The calculation of the accrual for medical, travel and health care expenses begin anew from the beginning of each year, causing problems in livelihoods for persons with disabilities at the beginning of each year. All expenses must be paid in full until the accrual is met and processed. Disability organizations have repeatedly proposed a gap year for payments if one of the payment ceilings is met two years in a row.

Many persons with disabilities are constantly having to apply for income support because of the fees they must pay. Legislation prohibits the use of debt collection agencies for public collection, but this does not apply to client fees. Recovery fees increase the costs for the client significantly and are not taken into account in the calculation of income support[101].

Poverty among persons with disabilities is the result of structural problems: low levels of social protection, complex benefit systems, education and employment systems that do not respond to the individual needs of persons with disabilities, and attitudinal and physical barriers to employment.

According to the VFS, cognitively disabled and neurodiverse respondents were the most likely to experience poverty, with over 40% of them feeling that their health care, for example, was compromised by poverty. Of all respondents, around 30% said that their access to health care, essential medicines, mobility outside the home and relationships were compromised by poverty, and almost 50% said that their leisure activities were compromised. 

A person with a disability living on a minimum pension for their entire adult life is living in poverty for life. Almost 60% of disabled working-age people who responded to the VFS had experienced poverty: the highest rates were among those receiving rehabilitation allowance (86%), the unemployed (79%), those receiving sickness allowance (73%) or rehabilitation allowance (64%). Even being employed does not always guarantee a sufficient income for a person with a disability: 48% of disability pensioners in gainful employment had experienced poverty, and 41% of other persons with disabilities in employment.

Even good education does not significantly increase the employment of persons with disabilities. Of the respondents to the Autism Spectrum Finland association’s survey, all had at least a secondary school degree and more than 20% had a higher university degree, but only 17% worked full-time, as did part-time. Work does not always match the level of education of the disabled person and does not always guarantee an adequate income: half of the respondents had to rely on social security benefits or the financial support of their relatives even when they were working.

Proposed questions

What action will the Government be taking to:

1. raise the minimum level of social protection and preventing total exclusion from social benefits?
2. ensure that reductions under the Customer Fee Act are actually granted and customer fees completely abolished for those on minimum social security?
3. better take into account the costs of disability in social security benefit decisions?
4. combine the payments cap regulation and practices?
5. waive the collection of customer fees without an enforcement order or decision?

Article 29 Participation in political and public life

Persons with disabilities are under-represented in social participation and political decision-making. As a result, issues such as accessibility and disability services are often ignored or dealt with from a perspective of people without a disability.

Of the respondents in the VFS, 20% experienced difficulties in participating in politics and public affairs and 25% in participating in NGOs and associations (Table 6). Other surveys also show that persons with disabilities have significantly lower levels of social and community participation than people without disabilities[102] . 

The Parliamentary Ombudsman has repeatedly pointed out that the conditions of polling stations do not ensure either access or privacy for voters with disabilities (initial report para 42) and that, despite complaints, political parties in elections campaigns have repeatedly held public events in inaccessible premises[103]. The Non-discrimination Act obliges public authorities to promote equality, but it does not apply to political parties that are considered as associations. Measures taken by political parties to promote the inclusion of persons with disabilities depend on each individual party organization.

Disability services also do not support the participation of persons with disabilities in politics and public affairs: in numerous cases, persons with disabilities have not received the transport services they need to participate in politics as candidates or decision-makers.

Proposed questions

What action will the Government be taking to:

1. ensure accessibility and ICT accessibility of polling stations and political activities?
2. ensure that persons with disabilities are adequately supported in their political and social participation?

Article 30 Participation in cultural, recreational, leisure and sporting activities

More than 30% of respondents to the VFS had difficulties in participating in recreational, leisure, and cultural activities (Table 7). Participation was hindered by barriers and poor economic situation: almost half of the respondents reported that their leisure activities were compromised by poverty, and by language or communication discrimination. Similar findings can be found in other studies[104].

In the Disability Exercise Survey, 65% of respondents said they exercise at least twice a week, 81% said they wanted to exercise more and 91% said it was important to them. The most common barrier to increasing physical activity was the lack of transport. Other reasons included lack of opportunities to exercise, poor financial situation, and insufficient personal assistance. 75% of respondents said they needed transport to get to their sporting activities and 54% said that there were not enough trips. 63% needed assistive devices for their sporting activities, but only 6% had received financial support from disability services to purchase assistive devices for their sporting activities. 52% had paid for the equipment themselves.[105]

Based on the experience of disability organizations and research, the provision of disability services and aids does not consider the equal right of persons with disabilities to engage in leisure activities, and the initial report does not take account for the role of disability services in providing equal access to leisure activities.   

According to the Finnish Paralympic Committee, there is no systematic collection of information on barriers to mobility for persons with disabilities, and accessibility is not widely understood. There is a lack of practices and sanctions to ensure accessibility in the management of sports facility construction. Physical activity is not included in rehabilitation and service plans and is generally not seen as an important part of the daily life of persons with disabilities.

Sign language users are often only taken into account from a disability perspective, even though they are also a linguistic and cultural minority. Half of the sign language respondents to the VFS felt they needed support for their cultural and linguistic identity, but only a third of them had received support[106].

Proposed questions

What action will the Government be taking to:

1. ensure equal access for persons with disabilities to cultural, recreational, leisure and sporting activities?

PART III THE SITUATION OF VULNERABLE BOYS, GIRLS, AND WOMEN (Articles 6 and 7)

Article 6 Women with disabilities

Women and girls with disabilities face multiple discrimination. The initial report contains few women-specific paragraphs or measures to improve the situation of women with disabilities. The government is committed to promoting gender equality at national and international level, but the issue of women with disabilities is rarely raised and there is little research on the subject.

Women with disabilities are more likely to live in poverty because of their low labor market status, low education level and minimum basic income, and their participation in the labor market is lower than that of men[107].  Survey data on the income level of women with disabilities is only available for women with visual impairments: their income is 65 cents per euro.^[108]

Almost half of the female respondents to the VFS said they had experienced inappropriate treatment in health services, particularly in relation to parenting, family planning and child custody.

In Finland, women aged 30-60 are invited for cancer screening every five years. The inaccessibility of screening units often makes it difficult for women with disabilities to attend and these preventive healthcare trips are not reimbursed. Less access to mass screening is an example of structural violence against women with disabilities^[109]. Girls and women with autism spectrum and ADHD are under-recognized and under-diagnosed. Their symptoms manifest differently from boys and men, and a correct diagnosis may be delayed or not obtained at all^[110].

Persons with disabilities experience more violence than the rest of the population (Article 16), and women with disabilities experience violence 2-3 times more than women.^[111] Women with disabilities also experience sexual harassment^[112] and sexist, gendered and identity-related hate speech up to five times more than men.^[113]  Being a member of several minority groups exposes people to multi-faceted hate speech.

Women responding to the VFS were far more likely than men to experience insecurity, abuse, and emotional violence, even from a spouse or acquaintance. Respondents had not reported or did not know how to report the violence they had experienced.^[114] Intimate partner violence, including its consequences, is more widespread and severe for women with disabilities because of the specific vulnerability of their disability (Article 16). The specific characteristics of physical violence experienced by women with disabilities include denial or neglect of care, nursing or personal assistance and the violation of an assistive device^[115]. Women with developmental disabilities are 4-10 times more likely to experience sexual violence compared to women without disabilities.^[116] The risk is particularly high for people living in institutions who know how to avoid threatening situations or how to act when they are victims of sexual violence^[117].

Finland has received numerous comments from the CEDAW Committee and the UN Committee against Torture on the prevalence of violence against women and the inadequacy of measures to combat violence^[118], which implies a lack of implementation of international conventions.^[119] The initial report does not describe the results of the measures for women with disabilities under the Programme for the Reduction of Violence against Women (2010-2015).^[120] In the more recent Programme for the Reduction of Violence against Women (2020-2023), the specific issues of women and girls with disabilities are missing from the measures. There was no representation of organizations of persons with disabilities in the Coordination Committee for the Implementation of the Istanbul Convention (2018-2021). Its action plan was authority-driven, although the GREVIO report calls for strengthening cooperation between organizations.^[121]

The CEDAW Committee highlighted[122] concerns about sexual violence against women with disabilities and the lack of specific services for victims of violence, such as accessible shelters and 24-hour hotlines. The Committee regretted that insufficient information was available on the socio-economic status, living conditions and violence against women with disabilities and called on Finland to take concrete action, such as training police officers on violence against women with disabilities and conducting regular comprehensive surveys and statistics.

The VFS also found that special services for women with disabilities who have experienced violence are inadequate, and the initial report does not mention measures to address this. Following the ratification of the Istanbul Convention, a 24-hour telephone service for shelters (Nollalinja) was opened in Finland, but it is not accessible to everyone as it is not available in text-based (SMS or chat) form^[123].

Proposed questions

What action is Finland taking to:

1. effectively combat violence against women with disabilities?
2. ensure that social, health and rescue professionals have adequate knowledge of the rights and needs of women with disabilities?
3. improve sexual health and access to mass screening for women with disabilities?
4. promote the sexual rights of girls with disabilities?
5. include women with disabilities in surveys in such a way that provides information on the multiple discrimination they face?

Article 7 Children with disabilities

The initial report describes the legislation on the rights and equality of children and young persons with disabilities, yet it does little to assess how these rights are implemented in practice. The focus of the report is on the consultation of the child. Other rights are given less attention.

The Ministry of Justice considers that the legislation and structures for child participation are largely in place, but that there are gaps in the implementation of the legislation for children with disabilities.^[124] Methods have been developed to consult children with disabilities, but in practice decisions concerning them are still taken either without consulting the child or on the terms of adults.^[125] In particular, the rights of children with hearing and speech impairments to express their views are severely lacking. The involvement of children with disabilities and the information gathered from them is limited and there is little research on the subject.

The UN Committee on the Rights of the Child has repeatedly urged Finland to ensure an adequate number of personal assistants and interpretation and transport services for children with disabilities[126]. However, the availability and adequacy of services still does not meet the needs. Respondents to the VFS under the age of 16 had higher levels of service needs than other respondents, and the most perceived gaps in access, quantity, and quality of services. The number of people under 17 receiving personal assistance has increased slightly, but not nearly as much as in other age groups (Figure 5). The interpretation of the resource condition for personal assistance has varied widely between municipalities and in case law, which puts children with disabilities in an unequal position (Article 19.)

Difficulties in accessing personal assistance, transport services and family support undermine the inclusion of children with disabilities.^[127] In the VFS, 72% of families of children with disabilities under 16 reported that their child either does not receive any or sufficient personal assistance (Figure 6) and 69% reported poor or fairly poor levels of participation in leisure and recreational activities. The need for assistance was highest for leisure activities, schooling, and daily activities. In addition to personal assistance and transport services, there would be a need for interpretation services. There are too few activities suitable for children with disabilities and assistance with activities and leisure time is left to parents who are already overburdened.

Families with children with disabilities often miss out on the support and services they need. The search for information, repeated requests for services, appeals against decisions, and the work of organizing and coordinating services are all exhausting for parents of children with disabilities.^[128] They become tired and ill themselves, and their employment is jeopardized as they struggle to access statutory services and support^[129].

Therapy rates for children have decreased^[130], while the number of children receiving rehabilitation has increased^[131]. One of the reasons given for the negative decisions is the rehabilitation recommendation of pediatric neurologists, which states that school is rehabilitation and therapy should take place before school age. There is no age limit in the legislation and rehabilitation is not in principle the task of primary education.

In the VFS, 58% of people under 16 had experienced inappropriate treatment in healthcare. Experiences of discrimination included restrictions on treatment based on disability, difficulties in accessing care, diagnosis and treatment, and derogatory and inappropriate treatment. Staff lack skills in meeting and communicating with children with disabilities. The service system does not adequately meet the needs of children and young people seeking help for mental health^[132]. The number of clients has increased by around a third since 2015^[133], leading to backlogs and long queues in child and adolescent mental health services and specialist psychiatric care^[134].

Children with disabilities are less well off than their peers and face more emotional, physical, and sexual violence and bullying.^[135]  Disabled young people experienced violence around 1.5 times more often than other young people, girls more often than boys^[136]. Experiences of sexual harassment and sexual violence are more common, especially among girls with disabilities, and increased between 2019 and 2021. 60-62% of girls with disabilities in secondary school had experienced sexual harassment and 22-26% had experienced sexual violence. Disabled children and young people are less likely to be satisfied with their lives, have fewer experiences of inclusion and more experiences of loneliness, and have poorer perceived health²³. They are less likely than other young people of their age to feel they have received help or can talk to an adult at school.  Children and young people are experiencing an increase in mental health problems. In the 2021 School Health Survey, around a third of girls and around 8% of boys reported moderate or severe anxiety^[137].

Proposed questions

What action will the Government be taking to:

1. ensure that children with disabilities are always listened to in matters that concern them?
2. ensure that children with disabilities receive disability and other services in a timely, adequate, and individualized manner, in particular transport and personal assistance, the lack of which has been highlighted by the Committee on the Rights of the Child to Finland?
3. increase information to families of children with disabilities about services and support and support families to cope?
4. ensure equal access to health care and rehabilitation for children with disabilities?
5. end long-term institutionalization of children with disabilities in line with Finland’s national target?
6. ensure that children with disabilities are fully taken into account in research and prevention of violence against children?

PART IV SPECIFIC CONTRACTUAL PROVISIONS (Articles 31-33)

Article 31 Statistics and data collection

No effort has been made to produce the information required by this Article. There is little researched and statistical data on persons with disabilities, based on indicators and systematically compiled. There is a lack of monitoring of the well-being of persons with disabilities as part of the social reporting required by law.

For example, in shelters, statistics are collected on the mother tongue of clients, but not on disability, classified as health information. Statistics would be important for monitoring access to services, and statistics on disability, like those on mother tongue, would not identify an individual person.

There is no separate public funding for disability research, only one university post and less than 10 other jobs. The Academy’s research funding is dependent on the researcher’s employment. Individual researchers receive only occasional research funding from foundations.

The production of information on persons with disabilities is largely left to organizations, but their research and analysis is too often not integrated into academic debate or public sector information production. Nor do they have the resources for follow-up research.

Proposed questions

What action will the Government be taking to:

1. ensure adequate resources for systematic and regular data production, statistics and disability research and promoting the involvement of organizations in data production?
2. gather information on the living conditions and well-being of persons with disabilities of different ages and abilities, including services and support that have been sought but denied?
3. ensure social reporting carried out in accordance with the law, taking into account persons with disabilities?

Article 32 International cooperation

Finland has supported the participation of persons with disabilities and organizations representing them in international and development cooperation. This support enables organizations of persons with disabilities in developing countries to be strengthened and to exchange information and experience with Finnish organizations of persons with disabilities. In NGO projects, disability mainstreaming and its monitoring has progressed. However, most of Finland’s development aid is channeled through the EU, UN agencies and similar large actors, and the resources allocated to disability organizations are limited. Finnfund under the Ministry for Foreign Affairs, which concentrates on business cooperation, is not mainstreaming disability into its work.

Finland’s development policy of mainstreaming the promotion of human rights of persons with disabilities in all development cooperation is progressive.[138] Finland has kept the human rights of persons with disabilities on the international agenda and has provided significant funding for the UN Partnership for on the Rights of Persons with Disabilities and the work of the Special Rapporteur on the Rights of Persons with Disabilities.

However, according to information made public in the spring 2023 government negotiations, official development aid funding will be cut significantly.

Proposed questions

What action will the Government be taking to:

1. continue to promote the human rights of persons with disabilities in all development cooperation and monitor the effectiveness of this work?
2. safeguard the resources of organizations of persons with disabilities to cooperate internationally?

Article 33 National implementation and monitoring

The measures implementing the Convention have been of a general nature and of limited practical significance. The importance of national implementation and monitoring obligations will become even more pronounced with the delay of entry into force of the new Disability Services Act on 1.10.2024, and its new preparation.

The authorities monitoring the implementation of the Convention, the Parliamentary Ombudsman, and the Human Rights Centre, are under-resourced and often the warnings or other guidance given as part of the monitoring are not followed in practice and there are no sanctions for ignoring them. Moreover, the monitoring authorities’ proposals for improvements to legislation, among other things, are not taken forward by the state administration.  All this undermines the effectiveness of enforcement activities in the national implementation and monitoring of the Convention.

Proposed questions

What action will the Government be taking to:

1. further develop national implementation and monitoring of the Convention?
2. ensure that the decisions of the monitoring authorities respected and proposals for improvements implemented?
3. strengthen the involvement of organizations of persons with disabilities in the implementation and monitoring of the Convention?  
4. ensure that the drafting of a new Disability Services Act is fully inclusive of OPDs and compliant with UN CRPD obligations.

Annex 1 Tables and graphs

Tables (source VFS)

Table 1: Percentage of respondents who had experienced accessibility problems in the last 2 years in:

in public spaces	78 %
on public transport	70 %
in streets and parks	68 %
visiting friends and relatives	65 %
at home	50 %

Table 2: Percentage of respondents who had experienced accessibility problems in the last 2 years in:

Information and communication	59 %
Signposts	54 %
On the Internet and other communications	49 %
Emergency and civil protection services	26 %

Table 3: Has your right to life been challenged?

No	73.1 %
Yes	26.9 %

Table 4: In the last 2 years, have you experienced?

	Never	Rarely	Quite often	Often
Physical violence	84.6 %	12.5 %	2.1 %	0.8 %
Mental violence	43.7 %	35.7 %	15.2 %	5.5 %
Sexual violence, abuse, or assault	90.8 %	6.9 %	1.6 %	0.8 %
Other exploitation	75.2 %	18.3 %	4.3 %	2.1 %
Insecurity	38.1 %	36.2 %	17.1 %	8.5 %

Table 5: In the last 2 years, have you experienced?

	Never	Rarely	Quite often	Often
Violation of personal integrity	71.2 %	19.9 %	6.1 %	2.7 %

Table 6 If you wish, have you been able to participate in the following?

If you wish, have you been able to participate in the following?	Badly	Quite badly	Quite well	Well	I have not wanted
Vote or stand as a candidate in elections	4.3 %	5.4 %	19.0 %	56.7 %	14.6 %
Politics and public affairs	10.6 %	9.4 %	14.3 %	15.9 %	49.8 %
Activities of NGOs and associations	8.7 %	19.3 %	23.5 %	34.2 %	24.1 %

Table 7: If you wish, have you been able to participate in the following?If you wish, have you been able to participate in the following?	Badly	Quite badly	Quite well	Well	I have not wanted
recreation and leisure activities	13.8 %	19.3 %	31.1 %	30.9 %	4.9 %
cultural life	12.8 %	20.4 %	31.0 %	28.2 %	7.7%
sport	18.7 %	20.6 %	20.9 %	17.6 %	22.2 %

Charts

Figure 1: Long-term clients aged 0-17 in institutions for people with developmental disabilities. Source: THL, Statistics and Indicatorsbank Sotkanet.fi

Figure 2: Hours of personal assistance 2010-2019 (%) Source: THL (2020), sub-report of the municipal survey.

Figure 3: Organisation of transport services in municipalities in 2007, 2010, 2013, 2016 and 2019, % of municipalities responding.

Figure 4: Parents’ views on the implementation of support for learning and school attendance for children with disabilities and functional impairments. Source: Finnish Disability Forum 2022.

My child receives enough assistance when needed
Assistance is arranged in a suitable way
My child receives assistance needed outside the classes (transfers, meals, breaks)
Support for learning received in right time
Personnel has necessary skills to support the child’s learning and schooling

Figure 5: Personal assistance clients per 100 000 persons of the same age in 2010-2019. Source: THL, Statistics and indicators bank Sotkanet.fi.

Graph 6: Personal assistance by age group, ”yes” respondents, %. Source: VFS.

                                 Do you need personal assistance?
                                 Are you receiving personal assistance sufficiently?
                                 Are you receiving personal assistance arranged in a suitable way?

Annex 2 Quotes from the VFS

Article 8 Awareness raising

”… the clerk reminds me that I understand that you have to be quiet at a concert. I don’t think a wheelchair means that I don’t understand the general rules and manners.”

Article 9 Accessibility and accessibility

”The lifts … small, so you can’t take an electric trolley to your friends. You have to use a wheelchair.”

”We live in a 2-storey terraced house. I can’t take a shower myself… my spouse carries me in a backpack to the wash.”

”Every week, there are places I can’t get to in a wheelchair because there are stairs at the entrance.”

”The employer is worried about how to cope with the disability in the workplace, especially when it comes to safety.”

Article 13 Access to justice

”We were made something to be auctioned to the lowest bidder. Someone else always knows better what aids and services I need.”

Article 16 Freedom from abuse, violence, and ill-treatment

”I had to terminate my employment because of the assistant’s aggressive behavior and threat of violence.”

”My child’s father is abusive and still uses emotional violence, even after more than 9 years of separation.”

Article 19 Living independently and participating in the community

”The city does not give person with disabilities any alternatives to housing, they have to live where they are allocated.”

”… I’ve applied for more assistant hours for the summer, because I want to be outdoors in the summer on equal terms with everyone else, but my social worker won’t agree to that either.”

Article 20 Personal mobility

”I would go out more with friends to do things if there were shuttle trips.”

”As I am an active person in many ways and I am involved in several organizations, as well as being involved in many cultural activities, I have to move around quite a lot outside my home, and the transport service is not enough.”

Article 21 Freedom of expression and opinion and access to information

”Because of my speech impediment, especially the officials don’t talk to me, but to my assistant or my mother. …I am treated like a three-year-old and I cannot get information that is appropriate and necessary for my age from anyone other than my mother.”

”There is still a high level of ignorance about persons with disabilities and their needs. The provision of an interpreter in many places is still not a matter of course. You still hear the saying: You don’t need to know everything.” 

”Kela’s interpretation services have indirectly made my life more difficult by forcing me to fight for my right to interpretation.”

”I feel a strong sense of exclusion without the help of an interpreter.”

Article 22 Respect for privacy

”Peace at home, an employee can come at any time with a key to sort something out and I’ve been semi-forced to make a weekly schedule for employees of what I do each day, justified on the grounds that I can get help when I need it.”

Article 24 Training

”Intensive support on paper since pre-school, yet it was only after years of wrangling and the child’s breakdowns and ward time that at school they realized, and there was at least some relief. On paper there is the help of a supervisor, in reality the supervisor is young, incompetent, and the school has never, for example, organized a meeting where we parents could tell the supervisor about the child. The shortened school week is the only real help, it is against the rights of the child. Inclusion not realized. ”

”There is no personal assistant, one assistant has several children. There is no sign language assistant, even though it is the child’s mother tongue.”

”We ourselves have had to fight for the level of aids and understanding of visual impairment at school for our child. Our child also tries to the last minute to be upbeat and do like everyone else, so the teacher thinks the situation is better than it is, no matter how much we explain.”

”The support was only provided after the child had already regressed to speechlessness at school [- – -].It required fierce insistence, lots of specialist medical examinations, several child protection notifications by the school, which added to the stress of having to convince child protection workers that we were not bad parents [- – -] and we still have not recovered as a family from this humiliation and stress, which stemmed entirely from the school’s unwillingness to understand the child’s challenges and provide support.”

Article 26 Rehabilitation

”You have to fight for the aids!  For example, it should be decided where you need toilet chair more – in the day care or in the housing unit!”

Article 27 Work and employment

”I, as a trained consultant, am not taken into account an expert enough in my field of work but they prefer to hear the opinion of a consulted expert.”

”It’s difficult to get into the world of work, only internships and work try-outs are available, nothing else.”

Article 28 Adequate standard of living and social security

”Poverty is when you can’t do anything that other people do. Then you stay at home and don’t go anywhere.”

”My glasses are 15 years old and I can’t afford to buy new ones.”

”Medication is probably the biggest problem, as I have not been able to buy the medicines I need.”

”Too low disability benefits cause poverty, so I am not able to invest as much as I would like in healthy food, good clothes, some hobbies are not taken up, I am not able to visit friends and/or family enough (insufficient taxi fares, high train and plane fares), so I find myself becoming marginalized.”

Article 6 Women with disabilities

”The gynecologist spoke inappropriately about my sex life, although it was not related to the issue itself. Often it is not me who is spoken to, but the assistant or the parents. May not take pain/symptoms seriously.”

Article 7 Children with disabilities

”They have not even tried to interview me, but at the same time they have judged that I do not know how to define personal assistance.”

”Applied for but refused (personal assistance), so the young parent had to leave paid work to help their child.”

”Access to research for children with neuropsychiatric symptoms is severely hampered. Parents need to know how to access the tests, information is available from peers, but not from professionals. Timely, early diagnosis and rehabilitation is important to prevent the child from becoming marginalised and to ensure a good start in school.”

”The overall responsibility for the arrangements for the care of a person with a severe disability lies entirely with the relatives. There have been attempts to pressure relatives to sign care restrictions. A severely disabled person who is susceptible to infection, weak and unable to communicate is forced to wait long periods in the emergency room.”

Annex 3 Older persons with disabilities

Claudia Mahler, an independent expert on the rights of older persons, visited Finland from 26.10. to 4.11.2021. She reported to the UN Human Rights Council on the legislation and implementation of the rights of older persons in Finland. Mahler met national and regional decision-makers, representatives of organizations and older persons. Mahler presented his report on his visit to Finland to the 51st session of the UN Human Rights Council in Geneva on 19 September 2022. The report contains recommendations to the Finnish government on measures to protect the rights of older persons. Here is a summary of the findings and recommendations concerning older persons with disabilities.

Older people do not seem to have access to adequate life-support services under other laws, such as the Social Welfare Act. This is reflected, for example, in the fact that a third of all people receiving disability services are over 65 and represent the fastest growing group.

Comments on older people in general: low level of social protection, lack of secure individual housing and care. There is an unfortunate high level of physical and psychological violence and abuse against older people. Discrimination based on language and ethnic and indigenous background, particularly against Sámi and Roma, is increasing among older people. Concerns about the use of restrictive measures that are applied more or longer than necessary or as a preventive measure to compensate for inadequate staffing in health care services. Inadequate or non-existent digital skills make it difficult or impossible for some older people to participate and interact in the digital society.

Recommendations to the Finnish government:

Sources:

https://www.ohchr.org/en/documents/country-reports/ahrc5127add1-visit-finland-report-independent-expert-enjoyment-all-human

https://www.ihmisoikeuskeskus.fi/uutiset/yk-n-ikaantyneiden-oikeuksien-asian/

Annex 4 Right to disability services and benefits for people with mental ill health that causes disability

The Parliamentary Ombudsman has ruled that the right to disability services and benefits for people with mental ill health and psychosocial disabilities is insufficient. There is no extensive statistical or other research available on this issue, and there is no data available on situations where a potential beneficiary does not even apply for a service or benefit, which could be used to assess the prevalence of the problem. Another key problem in examining the rights of people who meet the definition of disability because of mental illness is that it is often not possible to reach them through channels that connect them with people who self-identify or who are commonly identified as disabled.

The Parliamentary Ombudsman criticized the Kela customer advice and general information on disability benefits in decision EOAK/682/20201, in which the complainant had not received information from Kela that as a person with a mental health disorder, he could have been entitled to disability benefits for persons over 16 years of age. According to the Ombudsman, ”effective equality between the different recipients of disability benefits may require the authority to take explicit measures on its own initiative in an appropriate manner”, which in practice would have meant providing information separately. In its reply, the Kela said that it would develop its website on the basis of feedback, if necessary. ^[139]

In 2021, the Parliamentary Ombudsman issued a warning to the City of Kuopio, which had closed down its daytime activities for people with mental health problems organized in the health care sector without taking sufficient care to ensure the continuity of services. Moreover, the organization of daytime activities under the health care service has been problematic from the outset, as this should be a social welfare service organized under the Disability Services Act, the granting or termination of which should be decided on a client-by-client basis by means of administrative decisions subject to appeal. ^[140]

In early 2023, the Parliamentary Ombudsman published two decisions on the right of people with mental disabilities to disability services and the shortcomings in the implementation of that right.^[141] In the decisions, the Ombudsman states that he considers it problematic ”if the right to services under the Disability Services Act is not recognized when a person’s need for services is caused by a long-term mental illness that limits his or her ability to function”^[142] . The Ombudsman has launched an own-initiative inquiry into how welfare service counties will ensure that such failures do not recur in the future.

Annex 5 Finnish Disability Forum member organizations

https://vammaisfoorumi.fi/en/members/

Aivovammaliitto – no translation, association of persons with brain injury   

Autismiliitto ry – The Finnish Autism Association

Finnish Brain Association 

Finnish Epilepsy Association

Finnish Federation of the Visually Impaired

Finnish Neuro Society

Förbundet Finlands Svenska Synskadade rf -The Federation of Swedish Speaking Visually Impaired in Finland

Hengitystuki ry  – Finnish Association of Users of Respirators

Heta – Henkilökohtaisten Avustajien Työnantajien Liitto ry – Employers of personal assistants

Inclusion Finland FDUV

Inclusion Finland KVTL

Kuuloliitto – The Finnish Federation of the Hard of Hearing

Kuurojen liitto ry – The Finnish Association of the Deaf

SAMS – Samarbetsförbundet kring funktionshinder rf  –

Suomen Polioliitto ry – Finnish Polio Association

Suomen Reumaliitto ry – Finnish Rheumatism Association

The Alzheimer Society of Finland

The Federation of Swedish-speaking Disabled in Finland

The Finnish Association of People with Physical Disabilities

The Finnish Association of  Spinal Cord Injured Akson

The Finnish Association on Intellectual and Developmental Disabilities (FAIDD)

The Finnish Central Association for Mental Health

The Finnish CP Association

The Finnish Deafblind Association (FDBA)

The Finnish Neuromuscular Disorders Association

The Threshold Association

Vammaisperheyhdistys Jaatinen ry  – Disabled Families Association

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^{EOAK/3624/2007 https://www.oikeusasiamies.fi/r/fi/ratkaisut/-/eoar/3624/2007}

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Lepistö Joonas 2022. MTV News 17.4.2022 The number of young people waiting for mental health treatment beyond the legal time limit is now 9 times higher than before the cap https://www.mtvuutiset.fi/artikkeli/isompi-pommi-kuin-on-ymmarretty-mielenterveyshoitoa-yli-lain-maaraaman-ajan-odottaneita-nuoria-nyt-9-kertaa-enemman-kuin-ennen-koronaa/8401856#gs.vme9qe

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Lithovius Satu 2023. First knowledge creates a secure basis for the future of the family when the baby is not well. https://www.vau.fi/vauva/kun-vauvalla-ei-olekaan-kaikki-hyvin-ensitiedon-laatu-vaikuttaa-perheen-loppuelamaan/

LVM 2022. Ministry of Transport and Communications press release 4.11.2022. Study: there is room for improvement in the accessibility of public transport travel chains https://lvm.fi/-/selvitys-joukkoliikenteen-matkaketjujen-saavutettavuudessa-parantamisen-varaa-1856984

Mattinen Johanna, Mäntymaa Jaakko, Roslund Riku 2020. Yle News 4.4.2020. Doctors decided to restrict respiratory therapy for 8-year-old multi-disabled boy in the middle of an epidemic – TAYS denies that the corona influenced the decision https://yle.fi/a/3-11292537

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Mäntymaa Jaakko 2021. Yle News 8.11.2021: Days taped to a chair and nights tied to a bed with pallets – the unlawful treatment and abuse of a mentally disabled boy in a care home was allowed to continue for years. https://yle.fi/uutiset/3-12175567?fbclid=IwAR287zW3VC8yBPYzt4OSue7nhEsdXooB_3OLvLnYkT0zIJ2FC2AhKCXiS14

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[1] VN 2022a.

[2]  OM 2021a.

[3] Orjala 2016.

[4] Verma et al. 2012.

[5] Public transport for persons with disabilities LVM 2022.  

[6] Sormunen 2021.

[7] Jokela 2021.

[8] Finnish Disability Forum 2019a.

[9] https://www.saavutettavuusvaatimukset.fi/saavutettavuusseloste/

[10] HE 123/2016 vp, p. 20 and 33.

[11] https://www.kehitysvammaliitto.fi/selkokieli/

[12] Nieminen 2021. 

[13] Takala 2021. 

[14] EOAC 3624/2007.

[15] Vaarne 2015; Lithovius 2023.

[16] Kestilä et al. 2021.

[17] STM 2020.

[18] EOAK/3479/2020.

[19] Hiilamo 2020.

[20] Assulin 2020; Mattinen et al. 2020; Kaukonen 2021; Hiilamo 2020.

[21] UN 2020a.

[22] SOSTE 2020.

[23] YVV 2022, p.37.

[24] EOAK

[25] EOAK/4937/2021.

[26] YVV 2022, p. 37.

[27] EOAK/4063/2019; EOAK/2549/2019.

[28] Valvira 2017 and Valvira 2019.

[29] Valvira 2019. See also EOAK/1686/2022, EOAK/4119/2022.

[30] Valvira 2019.

[31] EOAK/2449/2019. See also the 2019 Report of the Parliamentary Ombudsman.

[32] EOAK/6206/2017.

[33] EOAK/3183/2018.

[34] Kaaro 2023a and 2023b.

[35] Mäntymaa 2021.

[36] Arvio et al. 2017; Karppinen 2023.

[37] VN 2022b, p. 13.

[38] OM 2021a, p. 59-61.

[39] VN 2022b.

[40] VN 2022b.

[41] THL 2019a.

[42] OKV/1/50/2018

[43] Cf. CRPD/C/GC/5, paragraph 37.

[44] CRPD/C/26/D/46/2018.

[45] Mietola et al. 2013.

[46] Heini et al. 2019.

[47] THL 2023b.

[48] Kääriälä et al 2021: The risk of out-of-home placement was about four times higher for children with a neuropsychiatric diagnosis: 18% of them had been placed outside the home before the age of 18, compared to only about 5% of other children.

[49] Lepistö 2022.

[50] YM 2016.

[51] Haarni 2019.

[52] EOAK 3232/2020.

[53] ASPA 2011.

[54] Mietola et al 2013; Mietola and Vehmas 2019.

[55] THL 2020.

[56] EOAK/5684/2020.

[57] CRPD/C/26/D/46/2018.

[58] CRPD/C/GC/5, paragraph 16. d) IV.

[59] YVV 2019; YVV 2020a. 

[60] Traficom 2019.

[61] Invalidiliitto 2018.

[62] THL 2020.

[63] THL 2020.

[64] VANE 2018.

[65] Lindell 2021.

[66] OKV 2014.

[67] OM 2021b.

[68] YVV 2020c.

[69] VN 2021a.

[70] https://www.kehitysvammaliitto.fi/tikoteekki/tietoa/puhevammaisuuden-kirjo/

[71]Insurance Court 3370/2020/896  

[72] Roisko et al. 2018.

[73] YVTLTK 423/2018.

[74] For a critique of the use of indicators, see Kröger and Wrede 2021.

[75] KVANK 2010.

[76] Kääriälä et al. 2022. STM 2022.

[77] Hiilamo 2022.

[78] Vitikka et al. 2021.

[79] Alila et al. 2022.

[80] Heiskanen et al. 2021.

[81] STV Learning support.

[82] Vainikainen et al. 2018; OAJ 2017.

[83] Lintuvuori 2020.

[84] Valjakka et al. 2021. Valjakka et al. 2022.

[85] Mäntylä et al. 2021.

[86] PeVM 10/2014 vp.

[87] University of Jyväskylä 2022.

[88] Heini et al. 2018.

[89] Lehto et al. 2019; Villa et al. 2016.

[90] OMC 2021.

[91] Finnish Disability Forum 2022.

[92] YVV 2018.

[93] Räty 2023.

[94] Ombudsman for Children 2016.

[95] EOAK/2295/2019.

[96] VN 2020b.

[97] VN 2017.

[98] EAPN Finland 2023.

[99] https://www.kela.fi/disability

[100] Kela 2023.

[101] Saarela 2020.

[102] Teittinen et al. 2015.

[103] EOAK/2657/2019; EOAK/166/2018.

[104] Teittinen et al. 2015. Also Eriksson, Susan & Saukkonen Eero (2022): Vaikeimmin vammaisten nuorten liikunnallinen osallisuus. Nuorisotutkimusverkosto,/ Nuorisotutkimusseura, Julkaisuja ,241. Helsinki: Nuorisotutkimusverkosto/Nuorisotutkimusseura. 157 s. https://www.nuorisotutkimusseura.fi/images/vaikeimmin_vammaisten_nuorten_liikunnallinen_osallisuus.pdf

[105] Odedeyi et al. 2019.

[106] YVV 2020b.

[107] Pohjalainen Pia 2021. Köyhyyden ilmenemät vammaisten naisten kokemuksissa. Helsinki University. Master’s thesis.https://helda.helsinki.fi/bitstream/handle/10138/327376/Pohjalainen_Piia_Maisterintutkielma_2021.pdf?sequence=2&isAllowed=y

[108]National Council of Women of Finland 2019.  

[109] Bishop 2013.

[110]  Kujanpää 2023; Koponen et al. 2019.

[111] KPGM 2018.

[112] VN 2022c.

[113] Pöyhtäri et al. 2013.

[114] Finnish Disability Forum 2019b.

[115] Bishop 2013.

[116] National Council of Women of Finland 2019.  

[117] THL 2023.

[118] UPR 2017; CEDAW Committee 2018.

[119] National Council of Women of Finland 2019.

[120] Ewalds 2013.

[121] GREVIO 2019.

[122] CEDAW 2014.

[123] Nollalinja 2021. 

[124] OM 2020.

[125] THL 2019b.

[126] CRC/C/FIN/CO/4, paragraph 41 b.

[127] VAMLAS 2016.

[128] Särkikangas Ulla 2020.

[129] Autism and Asperger’s Association 2018.

[130] Karppinen 2022.

[131] Kela 2017; Kela 2021.

[132] Huikko et al. 2023.

[133] Forsell 2022.

[134] Salakari 2023; Myllyoja 2023.

[135] National Council of Women of Finland 2019; Kanste et al. 2017

[136] VN 2022b.

[137] Helakorpi et al. 2021.

[138] See (Figure 5) highlights Finland as donor in https://devinit.org/resources/disability-inclusive-oda-aid-data-donors-channels-recipients/

[139] EOAK/682/2020 https://www.oikeusasiamies.fi/r/fi/ratkaisut/-/eoar/682/2020] (5.5.2023)

[140] EOAK/2719/2021 https://www.oikeusasiamies.fi/r/fi/ratkaisut/-/eoar/2719/2021]. (5.5.2023)

[141] People with schizophrenia are not provided with the social services they are legally entitled to. Parliamentary Ombudsman 30.1.2023 https://www.oikeusasiamies.fi/w/skitsofreniapotilaille-ei-tarjota-heille-lain-mukaan-kuuluvia-sosiaalipalveluja-. (5.5.2023)

[142] 5 EOAK/6600/2021, p. 17. https://www.oikeusasiamies.fi/r/fi/ratkaisut/-/eoar/6600/2021] and EOAK/1942/2021, p. 17; [https://www.oikeusasiamies.fi/r/fi/ratkaisut/-/eoar/1942/2021]. (5.5.2023)