PRESS RELEASE 7 FEB 2018 – FOR IMMEDIATE RELEASE
PERSON WITH INTELLECTUAL DISABILITY IS DEPRIVED OF THE RIGHT TO PERSONAL ASSISTANCE IN HIS OWN HOME – HISTORIC APPEAL FROM FINLAND TO THE UN COMMITTEE ON THE RIGHTS OF PERSONS WITH DISABILITIES
RECEIVES ASSISTANCE OUTSIDE BUT NO IN HIS OWN HOME
THE MINISTRY CAN FIX IT BY CHANGING ITS PROPOSAL
The appeal concerns personal assistance in accordance with the Finnish Act on Services and Assistance for the Disabled. Pursuant to the Act “it is required for arranging personal assistance that the person with serious disabilities has the resources to determine the content and manner of implementation of the assistance”. (’The resource criteria’).
CASE OF N.N.
N.N. is a man (now 36 years old) with physical and intellectual disability. He needs assistance in all daily activities around the clock. According to medical statements, a group residence solution is out of the question for N.N., and for independent living he needs a personal assistant 24 hours a day.
Originally, in 2014, N.N. applied for personal assistance for 140 hours/week in accordance with the Act on Services and Assistance for the Disabled (the underlying idea being that the family would be responsible for part of the assistance during the transition period). After various phases the final decision by the municipality was (in the decision of the Basic Security Board 11 November 2015) that personal assistance was granted 60 hours weekly, outside N.N.’s home.
The case was concluded within the Finnish legal system by the decision of the Supreme Administrative Court (14 June 2017, T 2911). As the case was not solved in favour of the applicant, it is forwarded to be considered by the UN Committee on the Rights of Persons with Disabilities to establish whether the resource criteria pertaining to personal assistance in accordance with the Act on Services and Assistance for the Disabled is in compliance with the UN Convention on the Rights of Persons with Disabilities or against it.
N.N. appealed to the Administrative Court. The Administrative Court rejected the appeal.
According to the Administrative Court, the municipality may have deemed that “N.N. does not have the resources to determine his need for assistance and its manner of implementation to such extent that 140 hours/week of personal assistance should be granted to him. Nevertheless, personal assistance can have been granted to N.N. mainly for independent activities outside home or preparing for them”. N.N. appealed to the Supreme Administrative Court. The Supreme Administrative Court rejected the appeal and approved the interpretation of the Administrative Court regarding the issue on resources for personal assistance.
Neither the municipality, the Administrative Court nor the Supreme Administrative Court evaluated the case thoroughly and explicitly from the point of view of human rights, although they were appealed to, including the UN Convention on the Rights of Persons with Disabilities.
The decision of the Supreme Administrative Court confirmed its earlier policy, according to which the habitation of persons with intellectual disabilities cannot in fact be enabled through personal assistance, although it is typically more possible with other categories of disability. The same kinds of problems occur with people with autism spectrum disorders. The decision means that these persons are forced to live in group residences, even if it were clearly against their individual needs according to a doctor’s view.
If N.N.’s parents did not assist him, he would be forced to move to a group residence unit in which individual service is typically not available, and which is not suited to him due to his disability.
THE MINISTRY OF SOCIAL AFFAIRS AND HEALTH AND THE PARLIAMENT NOW HAVE THE POSSIBILITY TO FIX IT
The legislation policy work on the issue of resources for personal assistance is in progress, and has been for some time. The Ministry of Social Affairs and Health would now have the possibility to change its proposal so that it would suggest the removal of criteria of having the resources to determine the contents and manner of implementation of the assistance.
The resource criteria was added to the Act on Services and Assistance for the Disabled in the reform of 2009. At that time other ways to arrange personal assistance besides the employer model were introduced (service voucher, purchased service, services provided by municipality). The reform was reasoned by stating that the obligation to act as the employer of the assistant had prevented some groups of persons with disabilities from receiving personal assistance. The reform of 2009 was a partial reform and the resource criteria was approved on those grounds.
The ”VALAS” report drafted during Alexander Stubb’s government proposed in spring 2015 that the requirement for resources be abolished. It was then noted that excluding some groups of disabilities from personal assistance through the resource criteria is an inequality problem. However, during Juha Sipilä’s government the goal to abolish the requirement for resources has been discarded despite the fact that feedback statements continued to demand strongly the abolition of the requirement. The government’s goal is to forward the bill on merging the Act on Services and Assistance for the Disabled and the Act on Special Care for Persons with Intellectual Disability to the Parliament during this government period, possibly by the end of 2018.
Now would be a good time to re-evaluate, first, more broadly the actual dissolution of the institutional habitation of persons with intellectual disabilities and, secondly, the abolition of the requirement for resources. Finland has the obligation to promote and develop the implementation of personal assistance gradually within its resources. In any case, no system must be discriminating. On that basis, it seems questionable that the “partial reform” has been valid for 10 years, and the State still does not have an appropriate plan on, first, how it will solve the inequality problem related to the system and, secondly, how it will develop the system of personal assistance to make it meet the need for assistance of all persons with serious disabilities.
INTERNATIONAL HUMAN RIGHTS TRIGGER OBLIGATIONS TO THE GOVERNMENT OF FINLAND
Article 19 of the UN Convention on the Rights of Persons with Disabilities ensures persons with disabilities independent living and inclusion in the community. According to the Article, persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement. According to the Article, persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community.
Article 5 of the UN Convention on the Rights of Persons with Disabilities secures the equality and non-discrimination of persons with disabilities. Surveys and experience from citizens’ society show that people with intellectual disabilities live with their parents far into their adulthood. There is a clear lack of services that would be allocated to those persons, including the lack of personal assistance. The strict regime of interpretation that the Supreme Administrative Court has assumed on the resource criteria pertaining to personal assistance places persons with intellectual disabilities in an unequal position compared to other persons with disabilities without a justifiable reason.
Article 14 of the UN Convention on the Rights of Persons with Disabilities ensures the liberty and security of persons with disabilities. Mandatory living in a group residence may be considered to be against that Article, especially considering that such arrangement is not suited to the person due to his disability, and that no services suited to living in a community in accordance with the individual need are available.
The response of the Finnish legislation and more broadly the judicial system to arranging the residential services for persons with intellectual disabilities is that they are placed in group residence units. Those can still be referred to as institutions, at least according to the terminology and norms used in the UN Convention on the Rights of Persons with Disabilities. Personal assistance should be available in the way referred to in the UN Convention on the Rights of Persons with Disabilities to everyone for enabling living at home. There are models for that purpose also regarding people with a cognitive limitation of function. Personal assistance shall be arranged to everyone according to the individual need and in applicable manner. Offering personal assistance also to persons with intellectual disabilities does not exclude offering it to others as well.
N.N. has spent a considerable amount of his own funds on the appeal process in Finland. The filing of this appeal was made financially possible by Finlands Svenska Omsorgsstiftelse, Jag Assistans Ab, Service Foundation for People with an Intellectual Disability, and SAMS – Samarbetsförbundet kring funktionshinder rf. Furthermore, Law Firm Kumpuvuori Ltd. has provided a significant share of the services pro bono.
To support the appeal, an expert statement was requested from the parties that work in the field of personal assistance and the right of persons with intellectual disabilities. A joint statement was issued by the Finnish Association for Autism and Asperger’s Syndrome, the Finnish Association on Intellectual and Developmental Disabilities, Inclusion Finland FDUV, the Threshold Association.
In addition, the appeal is supported with an expert opinion by Mr. Michael Stein, one of the most highly acclaimed experts in the rights of persons with disabilities, who is the Executive Director of the Harvard School Project on Disability. In his expert opinion, which he has contributed as a professor of law with twenty-fiver years experience in disability rights law, Mr. Stein is astounded by that Finland, regarded as among the leading States in providing support services for persons with disabilities, has consciously made decisions that restrict the ability of persons with intellectual, mental and cognitive disability to live independently, and instead is forcing these individuals in practice to live in segregated and institution-like conditions.
The CRPD Committee is the body of independent experts which monitors implementation of the Convention on the Rights of Persons with Disabilities. The CRPD Committee has not yet registered any individual communications from Finland. The Committee meets in Geneva. The CRPD entered to force in Finland on 10 June 2016 and is legally binding.
“The appeal is a historic milestone in the Finnish disability rights litigation history. Traditionally, in Finland changes have been possible through legislative changes made in concensus atmosphere. However, this did not happen now, and therefore we were forced to take the matter abroad. In a way, this is a sad story in the history of the disability rights in Finland. Finland would have every possibility to be the leading nation in the world when it comes to disability rights. We have one of the best welfare services for persons with disabilities and now even a strong legislation on non-discrimination of persons with disabilities. The current Government however, does not to promote this idea of world’s leading nations of disability rights, but, instead, is planning and executing cuts to disability welfare services”, comments Jukka Kumpuvuori.
Law Firm Kumpuvuori Ltd.
Jukka Kumpuvuori, lawyer, LL.M., Executive Director
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