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Iceland

D. Independent living

D1. Choice of living arrangements

According to the Act on the Affairs of Disabled People 59/1992, disabled individuals shall be entitled to have services where they choose to live. This is echoed in Regulation 1054/2010 on services to disabled people in their homes which places an emphasis on taking into consideration the preferences of service users with individualized service options. The Act on services for disabled people with long-term support needs (Lög um þjónustu við fatlað fólk með langvarandi stuðningsþarfir 873/2018) in Article 9 states that disabled people have the right to housing according to their needs and wishes and that the role of services is to enable them to live in their own homes and contribute to their full integration and participation in society. Further it is also stated that disabled people have the right to choose their place of residence and where and with whom they live, equal to others. However, there still remains a clause in the Act 59/1992 whereby the municipalities (that are responsible for disability services) retain the authority to decide on the nature and level of the services offered and thereby, in essence, govern where disabled individuals are able to reside.

A number of court cases suggest that the choice of living arrangements can intersect in negative ways with service provision, with decisions ruling against the plaintiffs (e.g. 116/2015 Bjarnason vs. the City of Reykjavík; 80/2016 Salbjörg Ósk Atladóttir v/Reykjavík). A worrying development in Iceland is the legalization of the placement of younger disabled people in retirement homes. In 2018, a change was made on the Law on health services (40/2007), the law on the affairs of older people (125/ 1999) and the law health insurance (112/2008). The amendment which covered changes to all three laws is known as 126/2018. The changes permit day services/placement for people younger than 67 (Art. 3) and residential placement for people younger than 67 (Art. 4) in nursing homes for older people. Previously services under this law were provided for older people (aged 67 or older). This change took effect on 18 December 2018, and was accepted by the Icelandic Parliament (Alþingi) despite protests from disabled people’s organisations.

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Update date: Tue, 2019-05-07

D2. De-institutionalisation

In Iceland, the mid-1970s saw the emergence of the first small-scale group homes and which, by the 1980s, slowly began to develop as the preferred alternative to large state-run facilities. The ideology of normalisation and integration was reflected in legislation of the era, for example in the Law on support for the intellectually disabled 47/1979, which later incorporated all disabled people in the Act on the affairs of disabled people 41/1983. The contemporary form of this legislation is the Act on the Affairs of Disabled People 59/1992 and which contains some important amendments that were enacted into law in 2010 (Lög um breytingu á lögum nr. 59/1992, um málefni fatlaðra no. 152/2010). While the larger institutions have dwindled, what has emerged is a collection of group homes and service apartments, some of which replicate institutional patterns in their practices.

The legislation regarding these matters has played a significant role in this regard in limiting choices on the part of disabled people, and maintaining institutional arrangements as on option, even though some of the legislation clearly envisions a community based, independent living scenario as the norm. Article 13 of the Act on the Affairs of Disabled People 59/1992, as amended in 2010, states that disabled people should have access to social services that enable them to live in their own homes in accordance with their needs and wishes as much as possible. The Act on services for disabled people with long-term support needs (Lög um þjónustu við fatlað fólk með langvarandi stuðningsþarfir 873/2018) strengthens the case for the choice for community-based, living arrangements. Article 9 of the Act states that disabled people have the right to housing according to their needs and wishes and that the role of services is to enable them to live in their own homes and contribute to their full integration and participation in society. Further it is also stated that disabled people have the right to choose their place of residence, and where and with whom they live, equal to others. A worrying development in Iceland is the legalization of the placement of younger disabled people in retirement homes. In 2018, a change was made in the Law on changes to health services, to law on older people and to law on social insurance 126/2018. The changes permit day services/placement for people younger than 67 (Art. 3) and residential placement for people younger than 67 (Art. 4) in nursing homes for older people. Previously services under this law were for older people (aged 67 or older).

Links

Update date: Tue, 2019-05-07

D3. Quality of social services

Quality of service monitoring in Iceland has not been carried out systematically, despite the fact that Article 1 of Act on the Affairs of Disabled People states that the authorities must take into account the international obligations the Icelandic government have taken on, particularly the UN Convention on the Rights of Persons with Disabilities, which Iceland ratified in 2016. In Article 36 of the Act on services for disabled people with long-term support needs 873/2018 (Lög um þjónustu við fatlað fólk með langvarandi stuðningsþarfir 873/2018), it is stated that the Minister will appoint a committee to oversee all policy matters concerning disabled people. The committee will be comprised of representatives from the Ministry, the municipalities, and four representatives from disabled people organizations. The Ministry is also tasked to ensure that disabled people are in the majority in the committee.

In May of 2018 a new state institution was formed - Gæða- og eftirlitsstofnun félagsþjónustu og barnaverndar (Quality and Monitoring Institute for Social Services and Child Protection). Their role is to monitor social services that are provided by the municipalities or other public bodies. This includes developing and publishing quality and performance indicators and which includes a strong focus on disability services.

Links

Update date: Tue, 2019-05-07

D4. Provision of assistive devices at home

The provision of assistive devices at home in Iceland is the responsibility of an agency known as Hjálpartækjamiðstöð, which is governed by Sjukratryggingar Islands (Icelandic Health Insurance) and which, in turn, is regulated by the Ministry of Welfare. The legislation which governs the provisions of these devices is Reglugerð um styrki vegna hjálpartækja nr. 1115/2013. (Regulation on the supports for assistive devices). Under this regulation, funding is provided for assistive devices that are required for more than three months. The Regulation also contains detailed lists of the specific devices that are covered and the extent to which such devices are funded. The level of support for these devices range from 50% to 70% to 100% in regard to the extent to which the State will cover the costs of their purchase and installation. The 2013 revision included a number of cost cutting measures, such as increasing the cost users pay for things such as diapers. This regulation is governed by Article 26 of the Health Insurance Act (Lög um sjúkratryggingar 112/2008).

The devices that are eligible for such support are those which are deemed to limit the disabling impacts of impairments as well as facilitate the activities of daily living. Medical/rehabilitative certification is required prior to the authorisation for funding of such devices. Such funding is also limited to those who have legally resided in Iceland for six months and are already eligible for health care coverage. Those who live in group homes have the same rights to assistive devices as those who reside within private residences, but if a device may serve more than one individual and can be shared in the group home, funding is only provided for one such device. Similarly, difficulties arise whereby the home is one’s legal and primary residence and as such an additional device will not be provided for a second home, such as in the case of disabled children whose parents have dual custody arrangements. Funding for assistive devices is not provided for those who reside in healthcare facilities, retirement homes, temporary/short-term residential institutions, children’s homes and such. In these cases, the institution is considered to be responsible for providing the necessary devices with the exception that the device is needed in order to make the transition from the institution to a private residence.

Links

Update date: Tue, 2019-05-07

D5. Availability of personal assistance schemes

A collaborative pilot project on User-led Personal-Assistance (Notendastýrð persónuleg aðstoð - NPA) was established in 2012 by the Ministry of Welfare and the municipalities in Iceland. User-led personal-assistance can play a critically important role in independent living and the ability to choose one’s living arrangements. Iceland ratified the CRPD in 2016, but User-led Personal-Assistance was not legalized until April of 2018 with the passage of the Act on services for disabled people with long-term support needs 873/2018 (Lög um þjónustu við fatlað fólk með langvarandi stuðningsþarfir 873/2018). Article 11 of this Act is specifically devoted to User-led Personal-Assistance (Notendastýrð persónuleg aðstoð - NPA) and states that individuals are entitled to this service option if they can demonstrate a significant and sustained need for assistance with daily activities. The assistance scheme is to be organised and managed by the user. The municipalities are tasked with implementing these programmes and this will be done in consultation with disabled people and their organizations. The NPA miðstöðin (The Centre for user-led personal assistance) is a collective operated by disabled people in Iceland for the purposes of providing assistance for the application, administration and monitoring of user-led personal assistance contracts in Iceland. The Centre can also provide assistance with hiring and managing assistants, shifts and hours, budgets as well as providing counselling.

In contrast with this progressive development, 'independent living' as mentioned in the recent Action Plan (Parliamentary Resolution on a Plan of Action on Disabled Persons’ Affairs 2017 – 2021 16/146) does not reference User-led Personal-Assistance/NPA directly and displays a rather poor understanding of what independent living entails.

Links

Update date: Tue, 2019-05-07

D6. Income maintenance

For those disabled people in Iceland who are not working, or not working full-time, a disability pension is the key form of income maintenance. The disability pension system is administered by the Social Insurance Administration of Iceland (Tryggingastofnun ríkisins), which is also responsible for senior pensions, health insurance, and occupational injury insurance. Tryggingastofnun is governed by the Ministry of Welfare (Velferðarráðuneytið). The pension levels for January 2019 are available from the Social Insurance Administration website in a document entitled Örorku- og endurhæfingarlífeyrir - janúar 2019 (Disability and rehabilitation benefits January 2010). The sums detail the maximum, and thus optimal, amounts available to pensioners. The core piece of the legislation which governs the disability pension system is the Social Security Act 100/2007 (Lög um almannatryggingar 100/2007). The basic set of criteria for eligibility for a disability pension is based upon age (from 18 to 67 years old); residency (resident of Iceland for three years prior to the submission of an application); and a medically assessed permanent impairment. It is important to note that the disability pension is comprised of the basic pension which all eligible pensioners receive (grunnlífeyrir), and also of the age-related disability supplement (aldurstengd örorkuuppbót), the levels of which are calculated based upon the age at which one is first legally determined to be disabled; the income security supplement (tekjutrygging), the full payment of which is linked to income and additional residency requirements; and the household supplement (heimilisuppbót), which is dependent upon the age (18+) and the living status. All of these components are governed by specific pieces of legislation and are determined by various criteria and payment reduction scales. There are essentially two classifications of recipients: those who receive a full pension (a rating of 75%), who are referred to as disability pensioners (Is. örorkulífeyrisþegar), and those whose impairments are not considered as severe and receive a rating of 50% to 74%. The latter receive a much less generous disability allowance (örorkustyrkur), therefore, alternative sources of income from waged labour or social assistance from municipal social services are required for those who are only eligible for this allowance. Those who receive a disability rating below 50% (often referred to as a rating of 10% to 49%), typically in result of an injury, are usually paid in a one-time lump settlement either from the State Social Insurance Administration or from insurance companies.

Links

Update date: Tue, 2019-05-07

D7. Additional costs

Aside from direct cash payment in the form of disability pensions, there are also a number of grants, subsidies, tax concessions and discounts that can offset the additional living costs of disabled people. The restriction of these benefits and entitlements is often limited to those who are evaluated as fully disabled (75%). This 75% designation governs eligibility to a wide range of discounts and services. Therefore, people not evaluated as ‘fully disabled’ not only receive less pension payment, but they may be excluded from receiving numerous discounts for themselves and their families, such as reduced pre-school fees, for example, or discounts on medicine or equipment. Some discounts, such as free swimming at municipal pools in Reykjavík for disability pensioners, are widely known about and often cited by disability pensioners as an example of such discounts. Other discounts, however, are not well advertised and are only discovered through research on the part of the individual, word of mouth, on-line forums and blogs, or pure chance. Some disabled people’s organisations include information on their websites about such benefits and entitlements, an example of which is Sjálfsbjörg’s Þekkingarmiðstöð, (Knowledge Centre). The evaluation procedures for such entitlements range from the cursory to the extensive depending upon the nature of the grant or discount. Discounted public transit tickets only require the display of a disability ID card at the point of purchase, whereas grants for the purchase or modification of a vehicle, for example, require a rather extensive application process.

Links

Update date: Tue, 2019-05-07

D8. Retirement income

The general entitlement to income for disabled people in Iceland over the age of 67 is the seniors’ pension system (ellilífeyrir). The age limitation for disability pension in Iceland’s is 67, after which pensioners are mainstreamed into the seniors’ pension system that serves the general population. The seniors’ pension system in certain ways mirrors the disability pension. They are both governed by the same legislation (Social Security Act 100/2007 (Lög um almannatryggingar 100/2007); the same state agency Tryggingastofnun (Social Security Institute) and the pensions are comprised of a number of components that are built on top of a basic pension level (grunnlífeyrir). Many benefits and discounts, such as discounts on public transportation or free swimming at municipal pools and so forth, are often bundled together as available for disability pensioners and seniors. In 2017, a number of categories that comprised the senior's pension, which mirrored in certain ways the disability pension, were collapsed into one basic category known as the senior's pension.

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Update date: Tue, 2019-05-07

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