Three questions to Veronica Magnusson Hallberg

How has the crisis information worked so far for your target groups?

Our members with Down syndrome and other intellectual disabilities have a hard time absorbing the crisis information. Very little information is available in easy-to-read and the information to support persons is inadequate. For example, there is no image support that can be used by personal assistants, care givers and staff at group homes. This means that a large part of our members has severe problems accessing important information. The actual content of the information is vague in terms of risk groups and what, for example, should apply if prioritization must be done in emergency care. This causes great concern. Recommendations from the Public Health Authority and the National Agency for Education are not followed by all institutions. It creates a difficult situation for care givers of people with Down syndrome in the special school, because the schools are incorrectly closed and they are forced to stay home without compensation.

What opportunities do children with intellectual disabilities have in choosing a school in Sweden?

In theory, everyone with intellectual disabilities has the right to attend elementary school, but in practice it is not the case. It is difficult to get good support in compulsory school, and it is often even harder to get support at leisure. This means that many people choose the special school even though it is not really what they want.

You also have the right to choose another special school than the nearest one, but in practice you do not get school transfer then, which means it is not a free choice in reality. In many cases, school choice becomes a financial issue for the family, and it shouldn’t be. In addition, if a child is enrolled in a special school, it is up to the principal to decide on integrated schooling, which means that special school pupils receive their education in primary school, and partly on whether the child should read subjects or subject areas. The parents have nothing to say about this, so claiming that children with intellectual disabilities have a free school choice is not true.

What are the most important issues for your members regarding digitalization?

We see that digitization offers great opportunities, but it is important that solutions become accessible. To date, accessibility has usually been about physical impairments, such as hearing and visual impairments, while the measures for people with intellectual disabilities are almost non-existent. It is mainly the language that is difficult for these groups and in those parts where human support is needed, there is not enough professionals around. We also see that our target groups are not taken into account when digitizing e-services. The latest example was when the e-health authority introduced restrictions in prescription management, which meant that parents of children over 13 years no longer access their children's recipes. The children can either handle an e-identification or give a proxy to their parent. In reality, parents need to organize an e-identification for the child and then use it, so the purpose of the reform - to protect the integrity of the young people who, for example, live under the oppression of honor – is completely lost.