Adolescence and adulthood, rare diseases

Youth, transition
to adulthood
Youth, transition to adulthood

The transition to adulthood leads to many changes in families.

These include career choices, new needs, the change from pediatric to adult medicine (called transition), changes regarding insurance and responsibilities, and physical changes, to name a few. This transition is a vulnerable psychosocial process in which many questions arise - for the young people involved themselves as well as for you parents. It is all the more important that this process is well prepared and that the young people and their parents are accompanied along the way.

Information about the disclaimer

Important notes

Note 1: Transition from pediatric to adult medicine must be prepared for

Prepare yourselves and your child well for the transition from pediatric to adult medicine (transition). Seek support from from your medical contacts (e.g., your child's pediatrician and possible new primary care physician). The transition should take place no later than between the ages of 16 and 17 at the latest. The focus here should be on promoting, strengthening and practicing your child's personal responsibility. If possible, take responsibility for making appointments with doctors and therapists, for obtaining and taking medication, and for going to the doctor's office alone. The goal is for the young person to practice independent health management according to his or her abilities. When exactly the Transition starts differs from case to case (often after the age of 18).

Note 2: A right of representation must be regulated from the age of 18

Remember that from the age of 18, you as parents can no longer officially represent your child in dealings with insurance companies and doctors, as parental care legally ceases to exist. Your child is of age and independent. If this is not the case, you need to clarify whether an Necessary and reasonable - unless there is a written consent (e.g. power of attorney) (e.g. power of attorney, guardianship). Take care of such legal such legal matters in good time. tailor-made assistance solutions can be agreed upon (generally (as a rule, participation or representation assistance is sufficient). The goal is to install protection only as far as necessary, because it means always a restriction of the right of self-determination. The solutions are individual, for example there are comprehensive guardianships, representative guardianships, Participation guardianships and accompanying guardianships. Depending on the individual Can be tailored to the individual situation. Get advice (e.g. from Procap). A consultation is suitable from the 17th birthday of your child.

Note 3: Prepare early for changes that come with adulthood

Ideally, the thematization of changes begins in the 13 to 14. Age through the caring school, acquaintances and you. In this is the time when the first questions about education and accommodation usually arise. From the age of 15 at the latest, young people are faced with important Young people are faced with important decisions regarding their choice of career and and financing their livelihood, and both you and your child should be well should be well prepared. Take care of the following at an early stage Counseling sessions at school and with the pediatrician. If it is determined that the primary labor market is not an option, or that it is an option with limitations, you can visit appropriate counseling centers (e.g. Procap, Pro Informis) or seek advice from foundations and vocational training centers for people with disabilities People with disabilities.

Note 4: Discuss the topic of vocational training with the responsible teachers and attending physicians at an early stage

Good vocational training for young people with special needs of central importance. Depending on the personal situation of the young Young people, different questions arise in the choice of training and in the Career prospects. Discuss your questions with your child's teachers and the doctors treating your child. In this way, you can find out at an early stage whether your child's career aspirations are suitable or whether it is better to look for something else. In addition, it must be clarified whether the possible physical/cognitive impairments restrict the choice of occupation. If the first job market is out of the question or at least there are doubts about it, vocational measures must be applied for with the IV. You parents play an important role in the process towards independence. You can provide your child with additional support on this career path by giving him or her self-confidence, encouraging him or her to take advantage of trial apprenticeships and individual trial days, and supporting him or her in the weaning process.

Note 5: Involves IV at an early stage if the primary labor market is not an option (or with limitations)

If you determine or suspect (in consultation with the teachers and doctors) that your child has a limitation on the first labor market due to the illness, it is important to involve the IV at an early stage. In this case, an application for occupational measures must be made in consultation with the doctors treating the child.

Note 6: The health insurance replaces the IV

If your child has a birth defect recognized by the IV, the treatment costs (which are related to this) are not covered by the health insurance, but by the by the IV. After the age of 20, however, even in the case of people with a birth recognized by the IV, the health insurance is responsible for the assumption of the treatment costs and not the IV And no longer the IV. If you are unsure Procap, Pro Infirmis or the social services of your hospital.

Note 7: Give some thought to the housing situation

Independent Living is part of the weaning process of a teenager. Think about early on about possible forms of living for your child. The question is which and how much support your child needs, respectively how independently your child can live. It can be helpful to involve the local social counseling (e.g. from the municipality), since they know the offers on site and can also advise on financing.

Note 8: There are many information and contact points on the subject of puberty, sexuality and love

The topic of love is very important for all young people. Therefore, even those with rare diseases should be should be prepared for sexuality, not only at school, but also by you by you parents. Inform yourself about the numerous information sites or Counseling centers, some of which also offer disease-specific education. What does the disease mean for the topics of sexuality, fertility, contraception, etc.? Discuss with your child who could be a suitable and trustworthy contact person (e.g. attending doctors, gynecologists). Also take a look at the websites of patient organizations, some of which provide disease-specific information on the topic of sexuality and family planning.

Important questions - Transition

What is Transition?

At school, through the IV and the care and treatment by trusted professionals in a children's hospital or other institutions, your child is usually very well taken care of until the age of 18 (sometimes even longer). Up to this point, you parents take care of the medical measures of your child. After that, there are many changes, such as the change from pediatric medicine to adult medicine (departure from the children's hospital, responsibility of pediatricians ceases) and instead of the IV is from the age of 20 years, the health insurance for the assumption of costs of medical measures. Discuss your questions and fears about the transition with the doctors treating your child.

What are some places to go regarding transition?

Cystic Fibrosis Switzerland

Cystic Fibrosis Switzerland has developed a brochure on "Growing up with Cystic Fibrosis".


On this website you will find more information about the Transition. For example, it explains who is usually the contact person, how the transition takes place and what parents should pay attention to.

Interesting Links

Transition information


In some cases, supported transitions exist in hospitals Transitions. One example is the "Multidisciplinary consultation for adults with disabilities" of the Children's Hospital of Eastern Switzerland and the Cantonal Hospital of St. Gallen. Registration takes place via the attending physicians.

Transitions program 1525

The association tranistion1525 offers a transition program for adolescents with disabilities or chronic illnesses in order to facilitate the Transition from pediatric to adult medicine and care regulate.

Interesting Links

Transitions programs 1525

Important questions - legal aspects

What legal aspects do I need to consider when my child grows up?


In the guidebook "What is my child entitled to?" Procap also addresses the issue of what young people with special needs are entitled to when they become adults.

In addition, Procap also offers a check consultation for young people and their parents. This involves checking together whether the right course has been set for the transition to adulthood and answering questions relating to the issues of choosing a career and financing their livelihood.

More helpful links

Important questions - school, training and career

Which institutions provide support in vocational orientation and training for adolescents/young adults with special educational needs?

With the end of compulsory education, young people enter a new phase in their lives. The choice of career is an important decision, and many questions arise. Can a suitable follow-up solution be found? Does your child need support from the IV? Is the young person up to the demands of vocational training? What are the chances and opportunities for vocational training? These and other key questions are decisive for young people with special educational needs when choosing a career and entering the world of work.


People with disabilities can enter vocational training if they meet the cognitive and technical requirements of the desired profession. They have the right to specific facilities at the workplace and in the vocational school.


EnableMe offers on the website a wealth of information and links on the topics of training and job search, legal basics, application tips, inclusion in companies, etc.

Cantonal IV offices

The central objective of the disability insurance is to integrate people with an people with an impairment into working life. Young people with with an impairment are given comprehensive advice and support by the cantonal or regional disability and accompanied by the IV office of the canton or region in their choice of occupation. In order for the disability insurance Can provide benefits, you must in any case submit a claim for vocational measures to the IV office of the canton (even if medical measures have been approved by the IV, occupational measures must be registered again).

Apprenticeship exchange

The association has the goal of promoting Apprenticeship placement in Switzerland. Here you can filter all listed open apprenticeships can also be filtered for those that are advertised for Young people with special needs. In the column "Handicap" or "IV", it is possible to sort accordingly. In addition, applications can be free of charge, in order to draw the attention of companies to the fact that there are that there are young people in their region who are looking for an apprenticeship who are looking for an apprenticeship.

Swiss Service Center for Vocational Education and Training (SDBB) | Vocational, academic and career guidance

The SDBB supports the cantons in the areas of Vocational education and training and career guidance and lists contact points for the and lists on its website contact points for each canton that can be can be contacted for career guidance. The offer is not not specifically aimed at young people with special needs.

Profile Foundation

Foundation Profil supports people with disabilities in their search for a job, in maintaining their job or finding a training position in the primary labor market.

Foundation Swiss Center for Curative and Special Education

The individual guidance is aimed at young people whose learning success is is impaired by difficulties for a variety of reasons and And varying degrees of severity. With individual support, the young people are Young people to develop their personal competencies to the extent that they can to meet the demands of society, the economy and education, and to develop their Economy and education and to develop themselves. The support program is explicitly intended for learners in the two-year basic vocational training program.

Impulsis association

Impulsis offers career integration programs for students (e.g. individual coaching for career entry, bridge programs with internship, coaching and training). Accompaniment during and after education is also offered by the association, as well as job coaching for (young) adults. The association does not directly address young people with rare diseases, but also supports those who receive IV.

What are the transitional solutions between compulsory education and basic vocational training?

Bridge programs differ greatly from one canton to another in terms of level and practical or theoretical orientation. The offers include school-based bridge offers, integration courses, pre-apprenticeships or pre-courses.

Inform yourself about the offers of the special schools and the contact points mentioned in the previous question.

What do vocational training centers and foundations offer for young people with an impairment?

Various Foundations and vocational training centers have offers regarding vocational training for people with with mental, physical or psychological impairments. The offers are manifold, examples: Vocational clarifications, taster days, Taster days, apprenticeships or preparation for the 1st labor market and job coaching and job coaching. We cannot list all vocational training centers and foundations here Foundations. If you are interested, please ask the teachers in charge.

Important questions - housing and independence

How to deal with the desire for independence?

The desire to live independently is part of growing up. For you as parents with a child, this step can also be associated with worries and fears. Look for a form that suits you as a family system. Also, if your child has special needs, there are different options for independent living. Look around in your canton of residence for offers such as assisted living, residential groups or homes and be sure to involve professionals (teachers, social counseling of the municipalities, etc.).


The "assisted living" program provides people with brain injury people with brain injury to live a self-determined life in their own home Own apartment.

Interesting links

Accompanied living


On, institutions for adults with disabilities offer a variety of day, residential or work opportunities.


Where can I find information and counseling services about sexuality for people with special needs?


As part of the Disability Forum Basel, this counseling center offers information and counseling around the topics of self-determination, relationships and sexuality for people with cognitive impairments.

Interesting links

Advice center

Crohn's Colitis Switzerland

The Crohn's Colitis Switzerland website lists information on intimacy and pregnancy.

Interesting links

Intimacy and pregnancy

Cystic Fibrosis Switzerland

Cystic Fibrosis Switzerland has developed a brochure on the topic of "Cystic Fibrosis and First Love".


On its website, EnableMe offers a wealth of information and links on the topics of the topics of partnership, dating and sexuality.

Specialized office for sexual education and counseling

Lust und Frust is a specialized center for sex education and counseling. On this website there is information for professionals, but also for Young people themselves. This site is not specifically designed for young people with special needs, but nevertheless contains important Information.

Sabrina Bühler-Pojar is a psychologist and affected mother herself. She offers psychological counseling (in the area of Schaffhausen, Beringen, Guntmadingen) around the topics of partnership, sexuality, family planning, disability as well as mourning.

Interesting links

Heart Happy

Herzfroh provides information on love, partnership, sexuality and is aimed in easy language at young people and adults with cognitive disabilities.

Interesting links

Magazine Herzfroh


This bulletin from hiki (help for brain injured Children) deals with the topics Intimacy, love, sex, friendship, longings and desires for security Security.

Interesting links

Bulletin 2020 - Intimacy

insieme Switzerland

insieme offers specific information on the topic of love and sexuality for people with cognitive impairment.

Interesting links

Love and sexuality

Clear and simple

On this website you will find information about sexuality for people with impairments. There is also an accompanying app. The information is is written in easy language and has illustrations.


Liebi+ is a counseling center for counseling, education and prevention on Sexuality, relationships, and sexual violence for people with cognitive Impairments.

Interesting links

Advice center


Lilli is a counseling center on sexuality, contraception, relationship, Violence, body issues and personal problems. This site is not specifically designed for young people with special needs, but still contains nevertheless important information.

Interesting links

Advice center

Interesting technical articles from the KMSK knowledge books "Rare Diseases

2. KMSK Knowledge Book "Rare Diseases - The Way - Genetics , Everyday Life, Family and Life Planning"

Mette Holmboe, Ateliers Division, Züriwerk Foundation: "Who can guarantee that the effort is worth it?"

Pirmin Willi, Brändi Foundation: "Meaningful work and training for people with impairments"

4. KMSK Knowledge Book "Rare Diseases - Psychosocial Challenges for Parents and Siblings"

Christoph Büschi, vocational guidance/vocational integration, Center for Children with Sensory and Physically Impaired ZKSK AG: "Stony Path to the World of Work"

Dr. med. Matias Imbach, General Internal Medicine, Ärztehaus Milchbuck, Zurich: "Young Young people in transition need committed doctors"

5. KMSK Knowledge Book "Rare Diseases - Digital Knowledge Platform for Parents and Professionals"

Colette Rymann, Wagerenhof Foundation: Support on the way to the adult world

Lukas Fischer, Mathilde Escher Foundation:

In the contradiction between detachment and dependence

Christian Kätterer, Rehab Basel: Well cared for until the age of 18 - and afterwards?