Interview Martin Boltshauser 2023/1 - Childhood cancer survivors:What does the future hold? - Campaigns - Current - Kinderkrebsschweiz

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“It is important to inform those affected about the legal aspects as early as possible”

An interview with Martin Boltshauser from Procap

Martin Boltshauser is a lawyer and Head of Legal Services at Procap, the largest Swiss self-help organisation by and for people with disabilities. As part of the legal consultation service for those affected, initiated by Childhood Cancer Switzerland, he and his team offer initial counselling sessions for survivors and their parents. 

Mr Boltshauser, you have a lot to do with childhood cancer survivors and their parents because of your work. What are the most common concerns that people come to you with?

Many of the questions I come across in counselling sessions are related to transitional situations, be it from school to training/further education or then on from there to work. Unfortunately, that is where it often becomes apparent that the late effects of the illness and therapy can make it difficult or, in the worst case, impossible to get started. Then there are cases in which the invalidity insurance (IV) is already involved because of the late effects. This includes the clarification of benefit claims such as the assumption of costs for medical measures, helplessness allowances, disadvantage compensation for school and much more. In fact, you could say that childhood cancer often leaves behind not only medical and psychosocial late effects, but also possibly entails legal consequences. And these legal consequences can be quite significant because they can have a decisive impact on the economic situation and the quality of life of those affected in the long term. In the legal consultation sessions, we inform survivors and/or their parents about risks and options for action with regard to social security.


Why can particularly the transitional phases into a training or work situation be critical? 

Every survivor is different and has their own story. Some of those affected are lucky and suffer hardly any late effects, while others struggle with physical or psychosocial limitations. This can take the form of difficulty concentrating, chronic fatigue, lack of social contact and other challenges. These problems are often pushed aside at first because it is quite naturally difficult to have to talk about deficits. Perhaps a lot of things are at least partially compensated for with the help of the parents and a disadvantage compensation, making other people think that everything is fine. However, the situation can become critical if it becomes clear during a training scheme or in professional life that capacity is indeed restricted. From a legal point of view, it is therefore extremely important to set the course as early as you can for possible insurance cover in the event of additional disability at a later date.


Some survivors decide to work part time because the late effects simply won’t allow them to work any longer. What should those affected pay attention to?

If an employee starts working at a reduced workload, for example at 80 or 60 per cent, without the invalidity insurance being involved or the existing reduced capacity being medically declared, this is considered voluntary. If this part-time workload has to be reduced even more later on due to further health problems or if someone has to stop working altogether, those affected can quickly find themselves in situations that endanger their livelihood. At this point, it can become difficult, perhaps even impossible, to claim an entitlement to invalidity insurance benefits. This is why it is imperative that any existing health restrictions that prevent a full workload be recorded in writing at an early stage. A realistic assessment of the late effects is needed because it can have a decisive impact on the years to come, perhaps even into retirement age. Unfortunately, neither a preventive registration with the invalidity insurance nor a medical declaration is mandatory. Survivors and their parents, however, are often unaware of this legal situation and there is a great risk that important deadlines will thus be missed. This can sometimes result in considerable disadvantages in the case of a later application to the invalidity insurance.


Most employers have reservations when it comes to cancer. This is why survivors often ask: “Should I or do I have to speak openly about my illness in a job interview?” How would you answer that question?

The legal position is clear. In general, applicants are not obliged to disclose past illnesses either in an application or the actual job interview – unless the disability or impairment is of relevance to the position advertised. In practice, we often see that survivors do not raise the issue in an interview because they understandably want to try to get a job first. However, if it turns out later that the person cannot deliver the performance required, this could under certain circumstances lead to their contract being terminated. On the other hand, we also know that most employers prefer to hire people without impairments. So if you talk about the illness and any impairments openly, you are putting yourself at risk of not getting the job. So there is no one standard answer. Furthermore, there are no obligations in Switzerland to employ workers with disabilities. I would therefore recommend that everyone reacts according to the particular situation. However, it can at times be too much for a young person to correctly assess their counterpart in a stressful job application situation. Professional application coaching would certainly help here. Career counselling would be just as important and would have to be specifically tailored to the needs of survivors. Unfortunately, there are currently not enough offers in this respect.


What support services does the invalidity insurance offer those affected in terms of professional integration and, in your opinion, are these enough?

In the case of survivors, this usually involves support for initial vocational training if additional costs of at least CHF 400 per year are incurred due to the disability. This might be the case, for example, if training takes longer or if additional support is necessary. In theory, the measures offered by the invalidity insurance should actually be sufficient. The real problem with vocational integration is our performance-oriented society. People who are not fully able to work due to a disability or impairment generally have a difficult time on the labour market. This becomes particularly apparent in childhood cancer survivors. On the one hand, they are not “fit” enough for the regular labour market, but they are “too capable” for lesser positions. They therefore fall through all the cracks. If they don’t realise that they can’t give 100% performance at work after all due to the late effects until they are actually in training or later on in their job, they run the risk of personal and financial hardship.


Scientific studies show that most survivors have hardly any disadvantages in terms of the level of education or training they have achieved. From your experience, what is it like at the start of a career?

That has to be looked at on a case-to-case basis. While some do well in training or getting an education, others have far greater problems and are often forced to take detours. It no doubt also depends on the industry as to whether someone can start a career successfully or not with limited capacity. In nursing and caring professions, it tends to be easier to find a part-time job due to the shortage of skilled workers. Theoretically, this option also exists in other professional fields, but reality often paints a different picture. A high degree of flexibility is usually expected, which means working overtime or full-time if necessary. For people with limitations, such as survivors who may suffer from fatigue, this kind of flexibility is often not possible because they are less resilient and simply need more rest than others. Then, despite the part-time workload offered, most employers are more likely to opt for an applicant who can give 100%. For people with disabilities or survivors with impairments to have an equal chance on the labour market, employers need to have more tolerance and openness.


What needs to change for those affected to be better informed and possible paths to be defined as early as possible?

Unfortunately, many survivors and their parents do not know how important it is to have the late effects of the illness clarified medically with regard to the later legal situation. In retrospect, it is very difficult to prove to the invalidity insurance that a person was already suffering from health restrictions at the start of training. That is why it is so important to inform those affected about the legal aspects as early as possible. This is the only way they can be, and can remain, capable of acting. From my point of view, it would therefore be desirable for legal counselling to be a standard part of medical and psychosocial follow-up care. And why not vocational orientation and coaching services? We all know that there are gaps in the service in this respect, too. Luckily more and more children and adolescents now survive cancer and that means more and more survivors will also be entering the labour market. One solution, for example, would be to design follow-up care as a kind of “overall package”. Unfortunately, there are virtually no services of this kind, but the legal consultation service from Childhood Cancer Switzerland is an important first step in the right direction.  


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