End of Mission Statement by the United Nations Special Rapporteur on the rights of persons with disabilities, Ms. Catalina Devandas, on her visit to Norway

Norsk versjon vedlagt

Oslo, 11 October 2019

Members of the press,
Ladies and gentlemen,

In my capacity as UN Special Rapporteur on the rights of persons with disabilities, I conclude today my official visit to Norway, which took place from 2 to 11 October 2019. I am an independent expert who reports to the United Nations Human Rights Council and the General Assembly, and advises on progress, opportunities and challenges encountered in the implementation of the rights of people with disabilities worldwide.

I would like to begin by warmly thanking the Government of Norway for their invitation to visit the country and assess, in a spirit of dialogue and cooperation, the level of enjoyment of the rights of persons with disabilities, the opportunities and existing challenges; and for the transparency, openness and excellent cooperation extended to me prior and during the visit. I would like to express my particular appreciation to the Ministry of Culture and Equality for coordinating my visit.
I would like to especially thank all the persons with disabilities and their organizations with whom I met, including children, who shared with me their situation, concerns and desires for change.

During my stay, I had discussions with numerous senior Government officials, including Ministers and deputy Ministers, County Governors and other representatives of county and municipal authorities, Parliamentarians, the Chief Justice of the Supreme Court, the Sámi Parliament, the Equality and Anti-Discrimination Ombud, the Equality and Anti-Discrimination Tribunal, the Norwegian National Human Rights Institution, the Ombud for Children, the Parliamentary Ombud, the Health and Social Services Ombud for Oslo, as well as organizations of persons with disabilities and other civil society organizations. I visited two hospitals with psychiatric facilities for persons with disabilities in Asker and Tromsø, the BET department providing alternatives to coercion within Blakstad hospital, two residential facilities for persons with intellectual disabilities, a special education school and an inclusive regular school in Oslo.

I will now present some of my preliminary observations and recommendations based on information provided by Government officials and by other actors, which I will elaborate in more detail in a report that I will present at the 43rd session of the UN Human Rights Council in Geneva in March 2020. These preliminary observations neither reflect all the issues presented to me, nor all the initiatives undertaken by the Government of Norway in the area of disability.

Legal framework

Norway ratified the Convention on the Rights of Persons with Disabilities (CRPD) in 2013, and it is party to every other UN international human rights treaty, with the exception of the International Convention on the Protection of the Rights of All Migrant Workers and Members of their Families. It has also ratified several but not all Optional Protocols to the international human rights treaties.

I would like to encourage the State to ratify this Convention, as well as the Optional Protocols not yet ratified, including the Optional Protocol to the CRPD. Moreover, it should consider the ratification of the “Marrakesh Treaty to Facilitate Access to Published Works for Persons Who Are Blind, Visually Impaired or Otherwise Print Disabled” administered by WIPO. I also encourage Norway to withdraw its interpretative declarations on articles 12, 14, and 25 of the CRPD.

The CRPD has not been incorporated into domestic law. This means that it does not enjoy the supra legal status of other international human rights treaties in Norway. I would like to encourage the State to reconsider its position on the incorporation of the CRPD into domestic law.

The Norwegian Constitution guarantees the principle of equality and non-discrimination. Moreover, the national normative framework covers persons with disabilities in various laws, including for instance the Equality and Anti-Discrimination Act, the Act regulating the Equality and Anti-Discrimination Ombud, the Health and Care Service Act, the Patients’ Rights Act, the Mental Health Care Act, the Sterilization Act, the Guardianship Act, the Education Act, the Child Welfare Act, the Election Act, the Planning and Building Act, the General Civil Penal Code, the Dispute Act and all other legislation regarding legal capacity. However, many of these laws contain provisions that are neither comprehensive nor fully in line with the CRPD. Other legislation fail to reflect a disability rights-based approach, as further discussed below.

Generally, Norway has yet to undertake a comprehensive process of transformation to harmonize all its legislation with the CRPD (article 4). I encourage all relevant authorities to undertake such a comprehensive review and ensure the compliance of  all of the national legal framework with the CRPD.

Policy framework

I welcome the adoption of the Government’s strategy “A Society for All” for the inclusion of persons with disabilities for 2020–2030, the National Inclusion Initiative of 2018, several action plans for universal design and increased accessibility, a policy on Norway's international efforts for the rights of persons with disabilities, as well as several white papers and reports to the Parliament (Storting). Some of these are discussed more in detail below. Furthermore, other mainstream policies are inclusive of persons with disabilities, such as the strategy to prevent hate speech, the youth health strategy and others.

In this regard, I encourage the Government to adopt an action plan with specific measures to implement the strategy “A Society for All” as soon as possible. While I was informed that the plan will be launched before the end of 2019, I have not received concrete information about its content. I urge the authorities to include time-bound benchmarks and to develop effective implementation plans at the central, county and municipal levels, along with the necessary budgetary and fiscal measures.

I was informed that other mainstream policies and plans are not inclusive of persons with disabilities and that general policies are not always framed under a disability rights based approach; including some of the disability-specific policies. I call upon the authorities to ensure that all public policies, including disability-specific ones, adopt a human rights-based approach to disability, and that they aim to support the effective and full participation of all persons with disabilities on an equal basis with others.

The implementation of the Sustainable Development Goals (SDG) at domestic level provides an additional opportunity to include the rights of persons with disabilities in national development policies and plans. In that context, I welcome Norway’s commitment to support the implementation of the 2030 Agenda on Sustainable Development domestically and internationally. To ensure that no one is left behind, efforts to achieve the SDGs should always consider the rights of persons with disabilities in a crosscutting matter and in line with the CRPD.

Implementation and monitoring of the CRPD

As of 2019, the Ministry of Culture and Equality is the Government focal point for matters relating to the implementation of the CRPD. As provided for by article 33(1) of the CRPD, I would also like to encourage the authorities to consider establishing a coordination mechanism within the government to facilitate action on disability matters in different sectors and between the central, county and municipal authorities, in order to enhance coherence in the interpretation of disability-related legislation and policies. This could include for instance the designation of disability and accessibility focal points within each ministry, county and municipal administration. 

I welcome the designation of the Equality and Anti-Discrimination Ombud as the independent mechanism to monitor the implementation of the Convention, as required by article 33 (2) of the CRPD. The Ombud has its own user committee for collaboration and exchange of experience with organizations of persons with disabilities and other interest groups, in line with article 33 (3). I was also pleased to learn that other independent monitoring mechanisms, such as the Norwegian National Human Rights Institution, the Ombud for Children, and the Parliamentary Ombud mainstream the rights of persons with disabilities in their work.

Data collection

Generally, I have noted a serious lack of official socio-demographic data and statistics disaggregated by disability. There is no official data available on children with disabilities below the age of 16 years and on persons with disabilities above 67 years. I was informed that this is due to the fact that Norway does not collect information concerning peoples’ individual characteristics to protect their privacy. While understanding this concern, this lack of data makes it very difficult to inform, design and monitor adequate rights-based policies and responses for persons with disabilities.

In this context, I welcome the collaborative efforts between Statistics Norway and the Norwegian Directorate for Children, Youth and Family Affairs (Bufdir) to establish official living condition statistics for persons with disabilities aged between 16 and 67 years old based on information from different registers, which will be published annually from 2020 onwards. I would like to learn more about this innovative methodology to disaggregate data by disability, which could potentially be applied in other areas as well.

General considerations on the current disability framework and response

During my visit, I noted that Norway is still in the process of transitioning from the medical model of disability, towards a human rights model of disability. Discussions about the rights of persons with disabilities are often framed in terms of social assistance and the CRPD is not well known among authorities. In order to ensure a systemic transformation of society, the Government needs to strengthen the human rights based approach to disability, including by providing guidance and support to counties and municipalities to strengthen capacities and skills to implement policies that are inclusive of the rights of persons with disabilities.

I have also noted significant disparities in access to education, health, employment, users’ personal assistance and social protection depending on where a person with disabilities lives in Norway. As the availability and quality of services varies considerably from one municipality to another, many persons with disabilities have no other option than leaving their homes to gain better access to their rights elsewhere, sometimes very far away from their families, culture and environment. There is an urgent need to enhance and guarantee an effective and coordinated implementation of the rights of persons with disabilities in all counties and municipalities across Norway.

The situation of indigenous Sámi with disabilities is particularly worrisome, as they do not have access to the same services and opportunities in their own languages or cultures. Sámi with disabilities often have to choose between gaining access to the necessary health and other services they need by moving elsewhere, or maintaining their Sámi language and culture but without access to such services. In practice, many feel they have no other option than moving to areas where few or no other Sámi live, and where access to Sami language in school and contact with Sámi social circle and family is very limited, in order to have better prospects of life. Sámi with disabilities, especially women and those with intellectual disabilities, are also particularly vulnerable to bullying, hate speech, violence and abuse. I encourage the Government to provide culturally sensitive services and as well as the necessary resources to support the Sámi population to develop their own disability services.

I am also particularly concerned about the situation of persons with intellectual disabilities, who face significant challenges in accessing their rights on an equal basis with others.

Accessibility to the physical environment, information and communication

I was informed that 80% of schools are not accessible and that only 25% of public buildings have an accessible entrance for wheelchair users. I also received many complaints about the daily challenges that persons with disabilities face to move around and access basic services, schools, workplaces or private spaces open to the public, including places of leisure.

I welcome the adoption of three consecutive action plans for universal design and increased accessibility since 2003, and the commitment of the Directorate of Public Constructions and Properties to make all governmental buildings accessible by 2025. However, I noted that efforts in this area are advancing very slowly, and I am concerned that the current plan for 2015-2019 does not make reference to the goal of having a universally designed Norway by 2025. The plan lacks concrete and targeted measures across sectors with earmarked funds. Moreover, municipalities increasingly grant exceptions to the requirement to make buildings accessible.

I urge the Government to accelerate and complete the process of transformation of the physical environment as soon as possible, and to address current shortcomings in the new plan for universal design and accessibility to be launched in 2020.

With regard to access to information and communication, I received little information about the use of closed captioning and audio-description to make broadcasting services accessible, nor on the development of plain language or easy-to-read materials for persons with intellectual disabilities. I learned that due to the policy of rapid digitalization of public services, persons with disabilities, especially the blind and older persons with disabilities, increasingly face barriers to access them. I am concerned that the Norwegian Sign Language is not recognized as an official language and that the provision of sign language interpretation services remains very limited, including when needed to access basic services.

Education

I would like to commend Norway for providing education to pupils with disabilities in regular schools as the general rule. According to the Education Act, all pupils, including those with disabilities, are entitled to receive individual accommodation as well as support to be included in a school nearby to where they live. Support systems for special needs education have been established at the national level (Statped service) and at the county/municipal level (PPT – Educational and psychological counseling service).

Notwithstanding this overall positive approach, almost 9% of children with disabilities receive education in segregated schools or classrooms. Children with disabilities enrolled in regular schools face multiple barriers to access education on an equal basis with others. There is a disconnection between the State’s commitment to inclusion in legislation and policies, and everyday implementation in practice at the county and municipal levels, reflected in long waiting time and lack of adequate services for pupils with disabilities and their families, putting them under significant emotional and financial pressure. Many schools do not have specialized teachers, school aides and adapted materials, and have limited capacity to provide curricular adaptations and accommodation in the classroom. Some parents struggle to navigate the local support system and division of responsibilities between and the NAV, the PPT and Statped. I encourage the authorities at all levels to strengthen coordination and ensure a seamless integrated delivery system.

Sámi children with disabilities face additional challenges due to the lack of qualified teachers who speak Sámi, the lack of adapted materials in Sámi language, and a teaching environment that is not always culturally sensitive. Children with disabilities are particularly vulnerable to bullying and violence at school. I would like to remind that the process of inclusive education does not only entail inclusion in the classroom, but also a change of culture and opportunities for children to socialize and to participate in extra-curricular activities.

Living independently in the community 

In Norway, since the de-institutionalization process carried out in the 1990s, municipalities are in charge of providing most services to persons with disabilities to live independently in the community. These services include housing, residential support, in-home support, personal assistance, and other community services. In addition, the Patient and User Rights Act, amended in 2015, grants persons below 67 years who have a substantial, long-term need for assistance the right to receive User-Controlled Personal Assistance (BPA) from the municipalities. The right to BPA also includes respite care for parents with children with severe disabilities who live at home. 

During my visit, I noticed significant gaps in the implementation of these services and benefits. First, practices in municipalities seem to be very discretional. Some municipalities provide a limited range of options to people in need of support, and often have long waiting lists to provide services. I have received information of persons with disabilities moving to another jurisdiction in order to obtain access to quality support. Second, the fragmentation of support services makes it very difficult for persons with disabilities to navigate the system. Third, in many municipalities, people with disabilities will not access benefits unless they file a complaint, but even in such occasions it could take years until a final decision is taken. Fourth, there are several concerns about the quality of the support provided, from limited hours to lack of competency of the personnel. Fifth, municipalities implement the BPA discretionally, often limiting the scope and hours of the support granted. Finally, an increasing number of persons with intellectual disabilities live in special housing arrangements, with common areas and facilities for daily activities.

I urge the Government to take immediate measures, in coordination with all municipalities and county governors, to ensure that all persons with disabilities have the opportunity to live in the community with choices equal to others. 

Social Protection

Under the Norwegian social welfare system, persons with disabilities have the right to access various types of income support and social protection benefits. These include universal national insurance scheme’s benefits, such as work assessment allowances and daily cash benefits, as well as disability-specific schemes, including the disability benefit, the basic benefit, the attendance benefit, and technical aids. Parents of children with disabilities can also access other benefits such as the care allowance, the attendance allowance, and the training allowance. 

I was informed that due to the low levels of employment among persons with disabilities, many depend entirely on these social protection schemes. For example, the national insurance scheme is the main source of income for 33% of persons with disabilities compared to 9% of the general population. As a result, the standard of living of persons with disabilities in Norway is lower than that of persons without disabilities, and some of their extra expenses may not be adequately covered. In this respect, it is important to note that the lack of appropriate support services in the community often increases the extra cost of living with a disability.

I appreciate the flexibility of the disability benefit, which allows for the participation in the labor market. I encourage the Government to pay close attention to the economic differences between people with and without disabilities and to take measures to address this imbalance.

Legal capacity

In Norway, under the Guardianship Act a broad range of persons with disabilities –mainly those with intellectual disabilities, psychosocial disabilities, dementia, high-support needs and autistic people – could have an ‘ordinary’ guardian appointed to manage their personal and/or financial affairs. The county governor appoints these guardians and the procedure is mainly administrative. Although as a general rule this regime is voluntary, there is no requirement of formal consent if the person is deemed as “unable to consent”, which contradicts its voluntariness. Additionally, the Guardianship Act permits to establish restrictions to the legal capacity through guardianships, which could be ordered against the will of the individual by a district court. 

According to data provided by the Ministry of Justice and Immigration of October 2019, there are 41,011 adults who are under ordinary guardianship and 236 who have court-ordered restrictions on their legal capacity. In almost 40% of the cases, persons placed under ordinary guardianship were considered unable to consent. Moreover, I was informed that ordinary guardianship mandates are often very general and, in many cases, guardians are appointed without even interviewing the individual concerned. Furthermore, I was informed that there is an increasing reliance on professional guardians, many of whom are lawyers, who handle a high number of cases each. For example, in the county of Oslo and Akershus, 300 professional guardians represent approximately 13,000 people. Under such circumstances, it is unlikely that the person’s will and preferences will be adequately attended and respected. 

The 2013 reform of the Guardianship Act aimed to address the paradigm shift of the CRPD. However, the act maintained an outdated approach to the recognition of the legal capacity in that it focuses on representation rather than on supported-decision making, and allows for limitations in the exercise of legal capacity. Instead of introducing greater safeguards to the existing guardianship system, Norway needs to embrace a paradigm shift in the way it addresses the legal capacity of persons with disabilities, including by recognizing and developing supported decision-making regimes of varying types and intensity.

I would like to urge the Government to appoint a law commission to review the existing legal framework and propose a new system for supported decision-making in accordance with the CRPD. In addition, I would also like to reiterate my recommendation to withdraw Norway’s interpretative declaration to article 12 of the CRPD. 

Coercion

Norwegian mental health and social care legislation provides for the use of coercive measures against persons with psychosocial disabilities, intellectual disabilities and dementia. The Mental Health Care Act, for example, allows for the involuntary admission and treatment of persons with “severe mental disorders” on the basis of lack of capacity to consent, need for treatment, and/or danger to self or to others. Permitted coercive interventions include involuntary admission, shielding/isolation, mechanical and chemical restraints, forced intake of drugs, restricted contact with the outside world, and outpatient commitment. The Health and Care Services Act and the Act on Patient and Service User Rights also allow for the use of coercion and force against persons with intellectual disabilities and those deemed unable to consent. Various international and national human rights mechanisms have extensively criticized this existing legal framework and its implementation.

During my visit I was informed that, despite government efforts, the number of coercive measures has remained steady over the years. For example, in 2018, a year after the amendment of the Mental Health Care Act, there were 7,849 involuntary admissions to psychiatric hospitals, 145 more admissions than in 2017. I was also informed that electroconvulsive therapy is still applied without free and informed consent on the basis of the principle of medical necessity in criminal law.

Against this background, the Government established a law commission to assess the need for amendments to laws relating to the use of coercion in the health and care sector. While I welcome many of the commission’s proposals, they still fall short in protecting the rights of persons with disabilities in line with international human rights standards, including the CRPD. In my view, the discussion should focus on how to implement supported decision-making and alternatives to coercion rather than amending the existing legal framework. As demonstrated by two services I visited during my stay in Norway – the Basal Exposure Therapy (BET) department in Blakstad Hospital and the free-medication ward in the Åsgård Psychiatric Hospital – it is possible to provide quality mental health and psychosocial support without any form of coercion. Coercive measures are not only contrary to human rights law; they are also ineffective to protect individuals and can prevent people from seeking support and services.

In this context, I urge the State to ensure that the current law reform process guarantees that all mental health and social care services are provided on the basis of free and informed consent. In addition, I would also like to reiterate my recommendation to withdraw Norway’s interpretative declaration to article 14 and 25 of the CRPD. 

Employment

According to official data from the Ministry of Labour and Social Affairs, the estimated employment rate among persons with disabilities is 44% compared to 74% of the general population. To address this challenge, I welcome the Government’s National Inclusion Initiative for the period 2018-2021 to increase the number of persons with disabilities or those with a “gap in their CV” in the open labour market. The initiative also introduced a minimum recruitment quota of 5% for workers with disabilities in the public sector.

Although the provision of reasonable accommodation, referred to in article 2 of the CRPD, is recognized by law in the area of employment, more efforts are required to enable the effective inclusion of persons with disabilities in the workplace, including by providing the necessary accommodations to ensure the recruitment and career development of persons with disabilities.

Participation of persons with disabilities

In relation to participation in decision-making processes, I was pleased to learn that, in general, the authorities consult with persons with disabilities and their organizations, even if there is no established formal consultation mechanism. It also provides substantial financial support to organizations of persons with disabilities through grants, as well as travel subsidies to engage with the CRPD Committee. However, organizations of persons with disabilities expressed the need to transition from simply consulting with them towards actively involving them in all decisions that affect them directly or indirectly. Similarly, the authorities are encouraged to make additional efforts to ensure the meaningful participation of the diversity of persons with disabilities in decision-making processes, in particular that of persons with intellectual disabilities. I would also like to encourage the Government to take measures to increase the participation of persons with disabilities in public functions.

In relation to political participation, I was informed that during the recent municipal elections, polling stations and electoral campaigns were not accessible to the diversity of persons with disabilities.  I learned that persons with disabilities that require personal support to vote are not allowed to be accompanied in the election booth by the person of their choice.   The law commission established to review the Election Act provides a great opportunity to address these challenges and to make the entire electoral process accessible and inclusive of persons with disabilities.

International cooperation

I noted with appreciation the efforts of the State to make its official development assistance increasingly accessible to and inclusive of persons with disabilities, in line with article 32 of the CRPD and the SDGs. Norway takes up the rights of persons with disabilities in multilateral fora, supports the UN Partnership on the Rights of Persons with Disabilities (UNPRPD) and engages in the Global Action on Disability (GLAD) Network to enhance the inclusion of persons with disabilities in international development and humanitarian action. Disability inclusion is considered in Norway’s international assistance efforts as a cross-cutting conditionality. 

Members of the press, Ladies and gentlemen,

Norway makes considerable efforts to include persons with disabilities in society and allocates significant financial resources to this goal. It has a comprehensive social protection system, with general and disability-specific benefits, an education system that allows all children to attend regular schools, and universal design initiatives at all levels of governance. 

However, the State’s commitment to the rights of persons with disabilities needs to be reflected in everyday practice. Furthermore, the State has an opportunity to adjust the legislation in the areas of legal capacity, mental health and social care, and embrace the paradigm shift of the Convention on the Rights of Persons with Disabilities.

Let me conclude by reiterating that I am very grateful to the Government of Norway for inviting me to visit this country, enabling me to deepen my understanding of the situation of persons with disabilities. This invitation – and what I have learnt during my visit – indicates a strong high-level commitment and political will to protect and ensure the rights of persons with disabilities in Norway. I hope that my visit and my report will assist the country to continue advancing towards the establishment of a truly inclusive society.