Emergency Alert: Swedish Government Cutting Personal Support and Service for People with Disabilities
There is an emergency alert situation emerging in Sweden. The Swedish Government is cutting personal and support services for people with disabilities. They have launched an investigation of the LSS, (The Swedish Act concerning Support and Service for persons with certain functional impairments), with a clear focus on reducing the costs of personal assistance services. At the same time, they have given directives to the Swedish Social Insurance Agency, that are to be seen as direct orders to reduce the LSS’s total costs. The total Government costs of personal assistance services are higher today but the Swedish disability movement and many researchers say that this cost increase has quite natural https://whirlwindwheelchair.org/wp-admin/post.php?post=2532&action=edit#causes.
The Government claims, without waiting for or even ordering an analysis of the increased costs, is that this increase is due to fraud and abuse. Researchers now believe that the Government is using a cynical method of making politically sensitive savings in the welfare sector. The method of analysis, which the Government says indicates a major fraud or abuse of personal assistance services has been rejected by the research community as inappropriate to use for social science calculations and are based on estimates and not actual facts. In addition, the Government has used political rhetoric, which sets social groups against each other, by stating that the total cost of personal assistance services must be reduced in order to provide financial assistance to other population groups in society.
The directives from the Government are one problem. The second problem is the Swedish Social Insurance Agency’s application of the LSS law.
The provision of personal assistance financial support has a divided responsibility between the Government (Social Insurance Agency) and the local Municipality. In order to receive Government financed personal assistance services, an individual must require more than 20 hours of basic personal assistance needs per week. The Government currently identifies and counts the number of hours an individual requires in order to meet their basic needs. (These basic needs are usually independence-related and frequently include the necessary requirements of everyday life), DHR considers this Government system to be unnecessary and just a matter of political determination for which government level is responsible for paying the cost. However, we also argue that all personal assistance needs are independence-related and we also say it is impossible to estimate our future independence-related needs by the minute and seconds (that is really what they are requiring today). If an individual requires less than 20 hours of basic needs per week, then they are required to apply for personal assistance services locally through their Municipality.
Another big problem is that the Swedish Social Insurance Agency’s interpretations of past legal judgments creates an assumption in which fewer people are expected to be entitled to personal assistance services or they are expected to require less personal assistance hours than estimated before. This assumption has serious consequences for the individual who needs personal assistance services in order to live in their own apartment instead of an institution. These individuals may be forced to stop working, a loss of personal assistance hours also affects families, and, in the worst case, this loss can also endanger the life of the individual. In practice, this pro-active reduction of personal assistance services by the Government risks jeopardizing the entire LSS law and thereby, reintroducing institutional thinking.
A few weeks ago, a draft report from the LSS investigation leaked out to the Swedish disability movement. If this report’s proposals become reality, it will means the end of personal assistance services in Sweden. Among other things, the report proposes that no personal assistance will be granted to children under the age of 12 or to elderly persons over 80 years of age. In Sweden, for many years, an individual has been able to retain their personal assistance services after the age of 65, but they will not be granted more hours after the age of 65. Even worse, it is recommended that no one will receive personal assistance services if they require less than 20 hours of basic needs. In addition, an individual will only receive 15 hours of other personal assistance services for activities outside the home, such as shopping, training or meeting friends.
Our Government actually feels no shame in publicly admitting that they want to save money on personal assistance services, and they justify this attempt at reduction of total costs, without proof I might add, by reporting that the trend of increasing costs is due to widespread fraud or abuse. On the contrary, research studies have indicated that cheating and abuse in personal assistance services is lower than in other types of financial support services funded by the Social Insurance Agency, but these other social services are not exposed to the same Government threat of cutbacks as personal assistance services.
The Government’s actions directly contradict the UN Convention on the Rights of Persons with Disabilities, and they use methods and language that we did not think was possible a couple of years ago. There are also clear indications that Government cutbacks in personal assistance services has also cost human lives and have caused a major reduction in the quality of life for those individuals who have lost their personal assistance services.
This is the background explanation for my international distress call.
In my opinion, the problem first arose when media journalists, without personal disability experiences or a deep knowledge of personal assistance services, began to comment on a small number of Social Insurance Agency’s judgments that revealed fraud. DHR considers fraud and abuse in welfare obviously unacceptable but our Government panicked and responded with this collective punishment of all people in need of assistance.
It is clear to me that our Government is not prioritizing the rights of people with disabilities. We also feel that our rights to self-determination and equal participation in society are being challenged. I will also send to you a letter written to Catalina Devandas Aguilar, the UN Special Rapporteur on the Rights of Persons with Disabilities.
Today, we are demanding that they stop the LSS investigation and restart their efforts to improve the law with new directives, in order to make any necessary changes to recreate this law in accordance to it´s initial purpose and intentions.
President of Swedish Federation of People with Mobility Impairments – DHR
UPDATE: March 8, 2018
One new development is that the Minister in charge of coordinating the Government’s policy on disability rights resigned yesterday. She was given the new job of Deputy Secretary General of UN Women. However, I think that changing the Minister of Disability Rights will have no effect on potential Government cutbacks to personal assistance services, since I fear that these directives to the Swedish Social Insurance Agency really comes from the Ministry of Finance.
UPDATE: March 11, 2018
New development. There is an article in the newspaper about a very sick girl who had personal assistance. Because her illness got worse they applied for additional assistance. The social insurance agency declined her request and said that her needs to go to the bathroom should be taken care of through her health care. These needs are something all people with disabilities have in my opinion it is not a health issue but a basic human need. Worse is that instead of granting her more assistance they threatened to remove her assistance entirely. Only after they had threatened the family to have their application canceled did they agree to freeze the decision to remove her assistance.
I thought I should let you know that today our government announced that they will change the directives to the investigation on personal assistance (LSS). The disability movement, including my own organization DHR, has criticized the former directives since they focused on cutting costs. Our new minister (replacing the former minister Åsa Regner, whom we had criticized) said that the investigator from now on shall not focus on cutting costs. Also, a new law is in place since 1st of April, which is meant to correct the results after several guided judgements had severe consequences for practice of the law.
Even though we don’t know the proposals that the investigator will put forward, we consider the last events as a success for the disability movement. We should celebrate our successes sometimes.
I will be meeting with the government in a couple of weeks to talk about the problems within the area of adapted cars. This is another area where our government is trying to save money with severe consequences for our right to mobility. At least we are in fighting spirit mode.
These are a few updates from Sweden. Mostly good news~
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