DHR send letter to UN about situation for personal assistance services in Sweden

A PDF-version of the letter

Dear UN Special Rapporteur on the rights of persons with disabilities,
Catalina Devandas Aguilar,

Sweden is one of the few countries that legally entitles a person with severe disabilities to personal assistance. This enables individuals themselves to purchase self-directed personal assistance services from public and private entities. Notably, the policy has created a demand-driven market for personal assistance where providers compete for customers on the basis of service quality.

Sweden has in this instance been a role model and even received an award from the Zero Project in 2015. In recent years personal assistance has been severely demoted.

The Swedish government has initiated an investigation into personal assistance as described in the Social Insurance Code and in the Act concerning Support and Service for Persons with Certain Functional Impairments (LSS). The various organisations representing persons with functional impairments have reacted vehemently to the fact that focus for the investigation is on cutbacks and breaking cost development. The government´s message is that the number of hours per assistance-user is increasing alarmingly, thus increasing costs.

LSS is called a freedom reform by the individuals it benefits, and an absolute necessity if persons with certain functional impairments are to live on equal terms with others. The government seems to take no notice of the explanations we put forward to explain the increase of hours. We have pointed out that the increase in hours is, among other things, due to the fact that many lose their personal assistance or are denied help because of change in practice. Those who remain eligible are fewer individuals with greater needs.

Personal assistance allows us to start a family, to have our own living accommodation or to live on equal terms with a partner, to make our own decisions concerning housework, how food is prepared and when we take a shower. It is impossible to put a price on independence and living a life on equal terms as others. We hold the strong opinion that personal assistance enables increased participation for the individuals it benefits and that alternative benefits are not comparable in terms of standard and the level of freedom it brings.

The government´s directives to the Swedish Social Insurance Agency included a directive to help decrease the development of the number of hours within personal assistance. The Swedish government thus gives what can only be seen as an order, to restrain the granting of assistance hours, despite the fact that it has not yet investigated the reason why the hours have increased. After severe criticism from the disability movement, the government made what it considered a clarification of the case in the Social Insurance Agency´s appropriation directions for 2017. We do not consider that the new statement is an improvement on the former one, it can be understood as putting more emphasis on the fact that the increase of hours is due to over-use. The government has no proof to back up this statement!

The Social Insurance Agency claims that there is a high rate of excessive use and fraud in connection to personal assistance and refers to investigations that rely on estimations and that have been criticised by researchers. More reliable sources have only been able to connect a much smaller fraction of the payments as being affected by possible over-use or fraud. Despite this, the Social Insurance Agency and the government continues to make these kinds of claims and uses a rhetoric that characterizes personal assistance as being a dishonest business.

Undisturbed, newspaper editorials have been able to jeer at how self-determination within personal assistance has got out of control while in fact self-determination is the mainstay in The Act concerning Support and Service for Persons with Certain Functional Impairments.

We are now seeing serious results of the government´s way of coping with the matter and the Social Insurance Agency´s changed practice after the Supreme Administrative Courts’ interpretation of the law. People who previously enjoyed assistance round-the-clock, have been completely thrown out of their activities. The Social Insurance Agency assesses that the individual falls below the 20 hours for fundamental needs, a requirement which has to be met if personal assistance is to be government-financed. Hence the costs are moved to municipalities that in some cases refer to other facilities, such as housing with special services for adults. Services in this kind of housing are connected to the building, not to the individual. Replacing personal assistance with these facilities is, for us, like bringing back institutions.

The government has argued that housing with special services for adults could be seen as equivalent to personal assistance. The stated aim of the ongoing review of personal assistance is to increase the accuracy of the activity. We are very concerned that the direction of development is towards more and more institutional-like facilities, as housing with special services for adults will no longer be a voluntary option if used as compensation for a totally different activity. Institutions instead of personal assistance are, from our perspective, not an acceptable option. They are, rather, complete opposites.

But there are also other consequences of great concern such as parents forced to give up work to watch over their children who doesn´t get sufficient support, and young people with functional impairments that have been obliged to turn down jobs that entail moving to other municipalities, because the new municipality makes a different assessment and denies activities.

We have no other interests than that the freedom reform Support and Service for Persons with Certain Functional Impairments shall be a guarantee for all people´s participation and self-determination. We are taking this initiative to write to the UN Special Rapporteur on the rights of persons with disabilities, CatalinaDevandas Aguilar, because we are deeply worried about the present situation. We feel a great need to call upon every possible voice in defence of personal assistance as it was originally intended, a fundamental freedom reform. We also hope that the UN Special Rapporteur on rights of persons with disabilities can call on the Swedish government to abide by the ratified UN Convention on the Rights of Persons with Disabilities, so that persons who have a right to personal assistance can feel confident that they can enjoy their human rights on equal terms as others.

Rasmus Isaksson
DHR – Delaktighet Handlingskraft Rörelsefrihet
(Disability Humanity Rights)

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