It's time to put our feet down!

In Sweden, user-controlled personal assistance is an alternative way of organizing practical assistance for persons with disabilities. The personal assistance gives the user much greater opportunities to control the services and everyday life themselves. If you need user-controlled personal assistance, you can apply for it at your local authority. But it's a tough process, and you often need legal support to run your case.

During the past year, I have been involved in two different individuals' application processes for personal assistance. In both cases, the user has had a legal representative. This is nowadays absolutely necessary, since 88% of the applications are rejected.

Even though it is professionals who handle it all, individuals whose entire life situation is at stake can feel the need for additional support. There are many certificates and other formalities to keep track of and communication with the authorities that are expected to help you can be complicated enough.

Everyone who has experience from investigations regarding any kind of assistance needs, knows how insulting and painful it is to be forced to respond to details of how many minutes a toilet visit takes and exactly how much help a person may need to take care of his or her personal hygiene. I've been through this before and should no longer be so badly affected, but regardless of whether I act as a relative, friend or employer, it actually makes me sick. Every time.

In order to find out how much assistance is needed, society devotes much power and energy to investigations of various kinds. In addition to that the whole process violates integrity, it is obviously legally uncertain, as different authorities can come up with completely different decisions regarding the same individual, based on the same basis, at the same time. The existence of cheating with assistance compensation is profoundly offensive for everyone. But what does this control cost? There must be a smarter way to get rid of the fuss than denying people with severe disabilities the help they are entitled to.

To put the cost in perspective

The social costs of personal assistance are approximately 3 billion EURO a year. These are staggering numbers. But they cover an industry with 96,000 employees, providing service to almost 20,000 people. Since a large part of the compensation goes to payroll costs, the state receives a large amount of tax and social security contributions. With assistance there is also a hidden profit in that relatives do not have to take leave or quit working completely to take care of the user. In some cases, assistance also allows the user to work and pay taxes.

A denial of assistance actually doesn’t lower the costs for society, because other care measures need to be taken instead. A rejection of the assistance application does not mean that the need for help will disappear. The social costs just move to another budget line, but when the debate focuses only on "3 billion EURO is expensive!", it sometimes seems like the sum is compared to no cost at all.

Another approach would be to consider the options. Do we really want Sweden to move backwards when it comes to fulfilling the UNCRPD? Do we really want persons with disabilities to be denied a dignified life on equal terms with others? Do we seriously want to save money on the most vulnerable?

I do not think so. But this group in society is too small for the politicians to really care about. The issue is too complicated to be discussed in fast debates. Too few understand in depth what it means when personal assistance is threatened. Relatives who already have too high a workload don’t have the energy to stand on the barricades as well. There are so many system failures that are discussed in parallel that it is difficult to hear this one in the noise of media.

It is getting worse

While I was writing this text, there was another setback:

A judicial precedent in the Swedish Administrative Supreme Court now allows for a tighter interpretation of the Swedish law on support and services for certain disabled people. This may mean that many people lose their right to personal assistance.

I tend to be the first to say that the disability area is moving forward, albeit slowly. But the dismantling of personal assistance is really a scandal for Swedish society at large and a human tragedy for many individuals.