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.

Susanna Laurin

Title: Chief Research and Innovation Officer

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.

Related chronicles by Susanna Laurin

  • Accessibility is moving forward – believe it or not

    6 May 2019

    Sometimes progress is hard to spot if you are in the middle of the whole thing. It might be useful to take a step back and reflect on all the different things going on in our business. The evolution is quite impressive, says Funka's Research and Innovation Officer.

  • Focus on elderly users

    7 February 2019

    Funka's CEO Susanna Laurin reports from a debate in the European Parliament and international standardization that deals with the inclusion of elderly in IT development.

  • Thanks for another amazing year!

    29 November 2018

    Another year of accessibility work is coming to an end. Funkas’ Susanna Laurin writes about the importance of positive feedback and the need to give appreciation to those who do the right thing.

  • Between hope and despair

    14 August 2018

    Monitoring and possible fines can be a driving force for accessibility. But at the same time, threats can mean that services are taken down. How do we make sure that legislation increases accessibility?

  • Make sure accessibility is afloat

    29 May 2018

    Funka's Susanna Laurin sees similarities between working with accessibility and taking care of a wooden boat. Both activities require patience and the results can make many people happy.

  • Germany Inclusion Days in Berlin

    5 December 2017

    The International Day of Disabled Persons keeps us busy in all our markets. This year we contribute to the Inclusion Days program in Berlin, Germany.

  • Accessible summer greetings

    12 June 2017

    As the sun glistens in the ocean, the birds wake me up in the early mornings and life gets a little easier once sunshine and warm weather turn our latitudes into paradise, a report on digitization makes me even more happy.

  • Funka in the U.S.

    6 March 2017

    We are always interested in what is going on in our market. When two conferences on accessibility, gaming and assistive technology happens in the same week, the agenda is filling up.

  • The eternal question of cost

    7 February 2017

    Funka’s Susanna Laurin reports from an EU conference on accessibility and legislation in Brussels. The focus is, as usual, on the economy.

  • To recycle consultants

    6 January 2017

    Two of our very competent consultants have tried their wings with our clients and then chosen to come back to Funka. Naturally, we're very excited and we've asked Oskar and Karin to tell us a little bit about their experiences.

  • 10 years with the UNCRPD

    8 December 2016

    Funka’s Susanna Laurin ponders what we celebrate on the international day of persons with disabilities. Accessibility seems - more than ever - a moving target.

  • An international perspective on accessibility

    4 July 2016

    Funka’s Susanna Laurin is reporting on an exciting meeting of experts from all over the world, at the US Access Board in Washington.

  • Report from the European eAccessibility Forum in Paris

    17 June 2016

    The French association for the visually impaired, BrailleNet, arrange an annual conference on digital accessibility. The theme for the 2016 edition was the internet of things. Funka’s own Susanna Laurin is reporting from the conference.

  • The dangers of legislation

    10 March 2016

    An unsettling trend is happening in the U.S.: by using legislation as a battering ram lawyers are making money, but inaccessibility persist.

  • There’s hope for the future

    30 November 2015

    Susanna Laurin's reflections on the situation for people with disabilities face in the world today.

  • Integrity and culture

    11 September 2015

    Funka’s CEO Susanna Laurin reflects on cultural differences between Spain and Sweden, personal integrity and how badly things can get, even when you try your hardest to do the right thing.

  • While we are enjoying it

    18 June 2015

    Funka’s Susanna Laurin considers trends in accessibility and the fact that we no longer have much time to reflect.

  • When technology can make a difference

    18 March 2015

    Different safety and technology aspects are being brought up as arguments against e-voting, but these problems must be possible to overcome. Funka's Susanna Laurin takes some time to reflect upon the democratic perspective of e-voting and today's broad lack of accessibility.

  • A mutual admiration society

    29 October 2014

    Funka’s Susanna Laurin questions why accessibility and user experience experts are so eager to talk to people with similar opinions. Would it not be better to let different views and opinions meet to bring about change?

  • Sunny days, but no time to be lazy

    19 June 2014

    We look back at a hectic period and look forward to even more work. But first of all, we will enjoy the summer holidays.

  • Good for all...?

    25 February 2014

    Funka’s Susanna Laurin rejoices in the fact that design for all really works in our everyday life.

  • Funka Christmas letter 2013

    20 December 2013

    Susanna Laurin, Funka, sums up a busy year. A year of continued growth, continued expansion in Norway and a new office in Madrid.

  • Why WCAG is not enough

    25 October 2013

    It is leaning towards legislation on web accessibility in the EU. Funka's Susanna Laurin takes a closer look at what the guidelines that almost everyone is pointing towards actually entail for the users.