Rare Diseases, KMSK Knowledge Platform, www.kmsk.ch

Insurance benefits,
Application, enforcement
Insurance benefits, Application, enforcement

Many affected families do not know what insurance benefits they are entitled to and what criteria must be met for such a claim.

It can happen that disability insurance (IV) and health insurance arrive at a different assessment of a claim than the families concerned. This can lead to a legal dispute in which affected families have to fight for their rights and claims. In other cases, on the other hand, it is quickly clear which benefits are covered by the insurance companies and parents as well as doctors* have to enter the appropriate claims.

Information on the disclaimer

Important notes

Note 1: Health insurance vs. disability insurance (IV)

The distinction between health insurance vs. disability insurance is important with regard to the assumption of costs for medical measures, if your child has a birth defect (see the List of birth defects of the IV). If your child has a birth defect, the costs of treatment are usually not covered by the If your child has a birth defect, the costs of treatment are usually not covered by health insurance, but by the IV, however, if there is no birth defect (as is the case with many rare diseases), the costs rare diseases), the health insurance will cover the costs of the treatment (compared to the Costs for the treatment (in comparison to the IV, however, no costs for travel expenses and for travel expenses and transportation). In principle, one of the two Insurance companies is generally responsible for the assumption of treatment costs (IV pays all treatment costs, with the health insurance remains a Own contribution = deductible). In addition, there are further special benefits of the IV, which children without birth defects can also receive (e.g. aids, helplessness allowance, intensive care allowance, etc.), Helplessness allowance, intensive care allowance, assistance allowance - the terms are are explained in detail below). When and which entitlement exists is below (section on disability insurance).

For those interested: on iv pro medico explains many important terms on the subject of Disability insurance are explained.

Note 2: Apply for IV benefits in good time (e.g. birth defects, helplessness allowance)

It is important that the IV is informed immediately that the IV must be informed as soon as a birth defect requiring treatment has been identified. Such a Such a birth defect is sometimes diagnosed directly after birth or in the course of development development. However, the IV can also be notified by the health insurance company of the child of the child concerned if it has an interest in the IV covering the costs of the IV to cover the costs of treating the birth defect. Also keep an eye that the IV is informed as soon as the birth defect requiring treatment has been Birth defect has been determined. This way you can also benefit from Benefits for treatment costs associated with the birth defect (especially travel expenses and transport). (in particular, reimbursement of travel expenses and transportation costs).

Important: Every benefit of the IV (medical measures, helplessness allowance, intensive care supplement, Assistance allowance, aids, occupational measures) must first and foremost be claimed by you parents to register with the IV using the appropriate form (this also applies to objections, complaints and also applies to objections, complaints and settlements). Without registration, no No benefit from the IV!

Important: The registration with the IV must be done in time, because IV benefits can be refunded for a maximum of one year be reimbursed for a maximum of one year. Also the registration of helplessness compensation should also be made in good time directly after the child's need for assistance has been of the child, as the maximum period of one year also applies in this case, in order to To apply for benefits retrospectively.

Particularly difficult, however, if no diagnosis is available or the rare disease is not listed on any rare disease is not on any list.

Tip: If you have an wait for confirmation from the IV or health insurance company that the costs will be paid for the assumption of costs before you pay anything.

Note 3: Early counseling (e.g., by social services) and intensive exchange with physicians can help to fill out the IV forms and make claims

It is worthwhile to seek help as soon as you have been diagnosed and get advice on the applications. It is too easy to make Mistakes are made in the application process that can have far-reaching consequences later on. For example, if a cross is placed incorrectly in the IV application, this can lead to the rejection of the benefits applied for. The Same goes for describing your child's limitations. The correct Answers and information are extremely important and cannot be corrected later be corrected later. Help in filling out and applying for IV benefits (e.g. (e.g. helplessness allowance, intensive care allowance) are offered by the primary social services in the hospital or counseling centers, as listed below (e.g., Pro listed below (e.g. Pro Infirmis, Procap). Here it is a matter of providing detailed and accurate information about the situation at hand.

Doctors should be consulted especially when it comes to applications for medical applications for medical measures. In this case, the responsible doctors are the IV office to submit a report after the application has been made submit a report.

Important: The specialists can fill out the applications, but you as parents must submit them to the IV submit them.

Note 4: be clear and honest in your application as well as IV home visits (and not embellish/exaggerate)

The IV determines the degree of helplessness (regarding helplessness allowance, Intensive care allowance and assistance allowance) by the IV's own This is usually done during a home visit.

Prepare well for this interview and inform the IV of all your child's Impairments of your child, without glossing over the situation. Here not to exaggerate, but to be clear and honest, also about what your child about what your child can or cannot do. Because besides your statements the IV can, for example, also request medical reports or consult other specialists. Inconsistencies in the statements should be avoided accordingly.

Important: In general Babies and toddlers need a lot of support and care in accordance with their Support and care. In this case, the need for assistance is only taken into account taken into account if there is a significant need for additional assistance due to the Compared to a child "without special needs" of the same age of the same age. For this purpose, cooperation with the Kinderspitex or social counseling can be helpful. These contact points can usually assess very well assess very well whether the care/support is within the "normal" range or whether a large Normal" framework or whether there is a great deal of additional work.

Note 5: Visualize caregiver burden to identify potential for relief

Why not write a diary about what you do with your sick child throughout the day? A visualization of the care required, for example, using a diary, can help to uncover opportunities for relief.

  • How long do you need for the different activities?
  • What tools do you need, where do you get them, and how much do they cost?
  • Who takes over which tasks?
  • Which aspects of care and support are the most stressful for you?

In addition, the introduction of a point system can help to weight the burden. This helps you to prioritize the challenges and can be used, if necessary, when applying for support services (e.g. by the IV).

Note 6: Caritas cultural interpreters help foreign-language parents with applications

Foreign-language families are at a distinct disadvantage when it comes to when it comes to applying for insurance benefits. However, for example Caritas, for example, arranges for people called Cultural interpreterswho help with administrative questions, translate and provide advice. In addition, many foreign-speaking families Families also rely on people from their (closer) circle of acquaintances, who may be taken along Who may be taken along to counseling sessions as translators.

Note 7: Registration with an association for legal advice and representation

As soon as possible after the determination of the illness of your child your child's condition, contact an association or organization for people with special Needs in your canton of residence for a consultation appointment.

The legal counseling centers listed below will help you to assess what you are entitled to (e.g. helplessness allowance, Assistance allowance, intensive care allowance) and how you can proceed in the event of a negative IV decision, and how you can proceed. Some of these contact points will also represent you also represent you in the event of a legal dispute. They often work together with lawyers Lawyers who are specialized in this field. The Specialization can be an advantage here, in order to be able to assess when it is when an appeal or even a legal dispute is "worthwhile" and how it should best be Best case scenario. The most important thing is that you get in touch with us as soon as you are diagnosed in the best case immediately. But before doing so, check whether you have legal protection Legal protection insurance that can cover your concerns.

Note 8: Apply for supplementary insurance in good time

In the area of rare diseases, therapies and treatments for affected children may be and treatments for affected children may be advisable, which are not covered by the Are not covered by the compulsory health insurance. Here, a supplementary insurance in the Complementary medicine with regard to therapies and remedies (e.g. homeopathy, traditional Homeopathy, traditional Chinese medicine) may be advisable.

Another supplementary insurance, which is generally always recommended is supplementary dental insurance. The premium for children is usually children and, depending on the health insurance, covers a wide range of services that the Benefits that the IV sometimes does not cover. Here it is important that you you inform yourself in time, make comparisons between different providers providers and, if you are interested, to apply for insurance before the Diagnosis (or even before the birth). Because unlike health insurance companies can reject applications here. If a newborn is diagnosed with an illness, it may be difficult to obtain supplementary to find supplementary insurance later.

Note 9: You can find a super overview in the Procap guide: "What is my child entitled to?"

In the guide "What is my child entitled to?"parents of children with special needs can find all the important Needs will find all the important information on social security law. It describes the topics with concrete examples from the consulting practice of Procap and gives tips. Also claims against other insurances insurance (health insurance, accident insurance, etc.) or topics such as educational and vocational and professional integration are dealt with. Finally, the Guidebook informs about the respective procedure.

Important questions - Disability insurance

Which costs can be covered by the disability insurance (IV)?

Children and adolescents with a rare disease can receive by the IV up to their 20th year of life with regard to medical measures (e.g. assumption of treatment costs, travel expenses and transport costs, Children's spitex), provided that there is a birth defect that needs to be treated exists.

For treatment costs that are not related to the birth defect that requires treatment treatment of the birth defect, are covered by the health insurance will pay. The health insurance also covers the treatment costs if there is no birth defect birth defect is present. In addition, in contrast to health insurance, the Health insurance, the IV covers all costs without deducting any excess. The most of the other IV benefits (such as helplessness allowances, provision of Aids and assistance contributions) are paid for life. The intensive care supplement can only be applied for from the IV until the age of 18. Whether and how the level of entitlement to these benefits is clarified by the cantonal IV offices will clarify. Many IV offices also offer informational events in their Canton to answer questions from affected parents (such as the IV in Bern). Have a look if there is something about this in your canton. In addition it can be and advisable to also visit independent counseling centers Counseling centers - as listed below (e.g. hospital social services Social services, Pro Infirmis, Procap), which specialize in the topic of "dealing with dealing with rejection notices".

What is behind the term birth defect?

All diseases defined as birth defects are listed on the List of birth defects. Such a birth defect is sometimes immediately after birth or in the course of the child's development. It is important that the registration (usually done by doctors) is done in time iV benefits can be reimbursed for a maximum of 1 year be reimbursed. In the case of insured persons with a birth defect that has been diagnosed by a doctor and the IV as requiring treatment, the IV will cover all medical measures necessary for their treatment before the insured reaches the age of 20 (including any rehabilitation costs). (including travel expenses and transport costs incurred in connection with the treatment) In connection with the treatment). From the age of 20 onwards, the health insurance is the health insurance is responsible for the financing of the medical measures responsible.

Interesting links

List of birth defects

What is behind the term helplessness allowance?

The helplessness allowance can be paid out to affected families regardless of whether their child has a birth defect or not. For the To assess the helplessness allowance, six daily living activities (getting up/lying down, dressing, eating, etc.) are six daily living activities (getting up/lying down, dressing, eating, personal hygiene, carrying out emergency tasks), (getting up/lying down, dressing, eating, personal hygiene, relieving oneself and locomotion/social contacts) assessed. Depending on how many of these activities the child is regularly and significantly and substantially, i.e. in principle on a daily basis, the child is assessed as being Helplessness (in three degrees of severity). Here it is important that the Time that Spitex devotes to the child is deducted from the additional work of the parents from the additional work of the parents. The higher the degree of severity, the higher the helplessness allowance Helplessness allowance. Anyone who claims a helplessness allowance must fill out a form every 3 Months and send it to the IV office. This form must the days on which the child lived at home and the days on which the child spent and which days the child spent in a hospital or home. Payment is made after receipt of the of the form. The use of the helplessness allowance is not bound to a specific earmarked. Parents therefore do not have to state what they are using the money for.

Important: The Need for assistance must exist for at least one year. So if surgery is due in 4 months, after which the need for help should be Need for assistance should be less, there is no entitlement to helplessness Even if the months until the operation are very difficult and stressful for the family and stressful for the family. At the same time, however, a special case applies in the case of Children under 1 year of age: if it can be confirmed in the first year of life that the Need of help will last longer than one year (e.g. in case of a syndrome) the Syndrome), the helplessness allowance is also granted without a waiting year. I.e. the 1st birthday can be very important under certain circumstances. The application form must therefore be before the first birthday at the IV.

What is behind the term critical care surcharge?

The intensive care supplement of the IV is intended for minors, who require particularly intensive care treatment. The prerequisite is, that parents already receive helplessness allowance for their affected child.

Depending on the assessment of the degree of severity (based on the Of the six life activities covered by the helplessness allowance, whereby locomotion is Locomotion is not taken into account), the IV pays a certain amount to the affected the families concerned, which may be used for additional care and is also and is also not earmarked for a specific purpose.

What is behind the term assistance contribution?

The assistance contribution of the IV offers families of children with special needs the possibility to hire an assistant for care and relief Relief. This valuable support service serves to, To promote the self-determination and personal responsibility of persons with special Needs so that they can continue to live at home. Entitlement children and adolescents up to the age of 18 who are receiving a Who receive a helplessness allowance from the IV and either attend a regular school or are entitled to an intensive care allowance of more than 6 hours. The amount of the assistance contribution, or the regular need for assistance, will be determined during an on-site assessment. For children and adolescents the assessment relates in particular to assistance with everyday living (e.g. personal hygiene, locomotion or dressing/dressing), social participation and leisure social participation and leisure activities, but also for supervision during the day or for Supervision during the day or medically necessary assistance during the night during the night. For information on IV assistance contributions, please contact Counseling centers such as Pro Infirmis or Insieme Switzerland.

Where you can find a suitable assistance for your child, is explained here explained in more detail: "Relief through care and assistance"

What is behind the term aid?

Insured children and adolescents with a confirmed diagnosis are entitled to IV aids in the areas of "mobility" and "independence and care facilitation". These are intended to enable them to manage their private daily lives as independently as possible. Children and adolescents (persons younger than 20 years) with a recognized birth defect are entitled to treatment devices under certain conditions. They are also entitled to such devices if their use is necessary in connection with a medical measure awarded by the IV. The IV does not always pay for assistive devices. If it does, there are associations and foundations that provide financial support or offer low-cost aids. Second-hand exchanges on social media and the like can also be a suitable place to start (see below).

Interesting links

AHV / IV aids

Leaflet aids

Important questions - Health insurance

Which costs can be covered by health insurance?

If your child does not have a birth defect, your health insurance will pay for the following treatment costs (e.g. doctor/hospital bills, therapies, medications, Pediatric spay/neuter care). The basic insurance covers the costs for treatments that are billed by doctors and for necessary medication, prescribed by doctors. Entitlement to benefits from the Basic insurance also covers emergencies, transportation and rescue operations Rescue operations, as well as in hospital and in semi-inpatient facilities. Therapeutic measures such as occupational therapy and physiotherapy as well as preventive Nutrition and diabetes consultations are also covered if they are prescribed by a doctor they are prescribed by a doctor. Additional benefits are also provided for Rehabilitation, nursing care, speech therapy or treatment by a chiropractor Chiropractor. Complementary medicine treatments such as acupuncture acupuncture or traditional Chinese medicine (TCM) will be covered if are covered if they are provided by physicians with a specialist title and appropriate recognized training or if the child has the appropriate supplementary insurance has a corresponding supplementary insurance.

Interesting links

Services and tariffs

Will the costs of a genetic examination be covered?

For child with an unclear diagnosis and a suspicion of a rare genetic disease, the The cost of genetic diagnostics is actually a mandatory benefit of the basic a compulsory benefit of the basic insurance (the IV is accordingly not is not responsible and only covers the costs in individual cases). If you do not want to pay for the costs themselves, must therefore expect a longer period of time for clarification of the For the clarification of the assumption of costs before the start of the analysis Submit a cost request to the health insurance company. This is only not necessary in cases 1 and 2 this is not necessary:

(1) If there is a suspicion during the pregnancy, there is always a great Time pressure is present. In this situation, it is not necessary for chromosome examinations to be for chromosome testing is not necessary and the analysis can be performed very quickly Analysis can be performed very quickly.

(2) If the child has to stay in the hospital for a longer period of time after birth, the hospital will sometimes Hospital will sometimes cover the cost of genetic testing.

(3) In all other cases, i.e. when the child is already born and is not so that it has to stay in the hospital, an application should first be submitted for the To be sure that the basic insurance will cover the costs of the diagnostic tests Basic insurance will cover the costs of the diagnostic genetic tests.

Here the attending physician must submit an inquiry to the health insurance company, which must Health insurance company, justifying the necessity of the test on a therapeutic therapeutic level. Each medical service must fulfill the meet the so-called WZW criteria. WZW stands for efficacy, appropriateness and economic efficiency. In individual cases, this can result in the That the costs are not covered.

Are certain medications specific to the rare disease covered by health insurance?

Rare diseases often require the use of rare drugs, some of which are Drugs, some of which have only recently been developed. The approval approval of these drugs and their inclusion in the list of specialties requires prior proof of their Efficacy and safety. In the case of drugs for rare diseases, it often takes years until official approval is granted, even though proof of efficacy has been provided. For this reason, the drugs are not covered per se by basic insurance, but rather a cost approval must be submitted by the responsible specialist must be submitted. These medications are often very expensive and the Health insurance companies may therefore refuse to cover the costs.

Interesting links

List of specialties

Important questions - Administrative support

What is the IV application process and who specifically assists in filling out the IV documents?

As a rule, the forms are filled in via the Internet. The administrative effort is considerable. Get good advice on the insurance situation Insurance situation so that you receive the support to which you are entitled. The IV application must be completed in full and sent to the IV office of your canton of residence with the the IV office in your canton of residence. Until families receive the decision the decision of the IV concerning medical measures, it takes some time (several weeks to months). Until then, the health insurance is obliged to pay in advance. Support can be provided in particular by the following five Contact points can offer support: Social services in the hospital, Procap, Pro Infirmis, Insieme and Cerebral Association, which offer counseling services throughout Switzerland and are Offer counseling services. There are also a large number of other patient organizations, -foundations, etc., which also provide advice on insurance benefits, some of which are specialized in specific diseases and/or regions are specialized.

insieme Switzerland

insieme supports people with intellectual disabilities and their And their relatives, so that they can better cope with problems or challenges in connection with their mental handicap. insieme offers information, practical tips in Information, practical tips in guidebooks and brochures as well as advice and and information.

The team of the office advises the families in legal and socio-political and socio-political questions and also offers professional support.

Interesting links

Support and advice


Procap supports families of children with disabilities with Questions regarding social security law and offers both individual consultations (where and when they can file social security claims) as well as legal Legal representation. In addition, Procap offers young people with disabilities and their their parents a so-called check consultation (first consultation is free of charge), in which it is checked whether the course for the transition to adulthood has been correctly set are set correctly.

Pro Infirmis

As a professional organization for people with disabilities, Pro Infirmis Pro Infirmis is committed to self-determination and inclusion. Pro Infirmis advises, and supports people with disabilities and their relatives throughout And their relatives.

The social workers at Pro Infirmis have extensive knowledge of knowledge in the field of social insurance and often work together with lawyers Often work together with lawyers.

Social services children's hospitals

The social services of the Swiss Children's Hospitals are not only only for low-income families who are entitled to social assistance. They are points of contact for all families whose children have a rare Disease, to provide advice on social legislation, insurance and costs related to treatment Costs associated with treatment.

In addition, the Social services help to organize relief in everyday life and, if possible, refer to further And, if possible, refer to further specialized agencies in the respective region of residence.

Mosaic Foundation

The counseling center offers people with a disability and their And their relatives comprehensive advice, support and information. The Services are generally free of charge and are provided on a voluntary basis Basis.

Interesting links


Association Cerebral Switzerland

Association Cerebral Switzerland informs and supports people with cerebral disabilities and their relatives. Families are supported in their concerns such as equality, Self-determination, inclusion etc. are supported.

Important questions - legal advice

What legal options are available to parents after IV or health insurance decisions are denied?

Insurance refusals can be appealed within a period of within a period of 30 days by means of a petition (in the case of a preliminary decision) or by means of an appeal (in the case of an order) (in the case of an order). In this case it is advisable to Only file an appeal if there is a chance of success. For the review and the possible representation, you usually need specialists such as Social security specialists or lawyers who, in the best case, are specialized in rare Specialized in rare diseases. If you have a legal protection insurance (you should take out this insurance before the birth of your child), get advice on this as well. The two largest legal services, which are offer legal advice and representation throughout Switzerland and are not specific to any illness are Inclusion Handicap and Procap. In addition, a large number of Foundations and associations also offer legal advice.

In principle, you can also use other lawyers (e.g. schadensanwaelte.ch). However, it is advisable to hire those who are specialized in rare diseases specialized in rare diseases. In addition, the contact points that support you with the IV application (see above) will advise you on legal issues (often free of charge) (and often free of charge). However, they do not usually offer Legal representation. Social counseling centers sometimes work closely with With legal services and, depending on the families' financial situation Situation/legal expenses insurance of the families, they can depending on the financial situation/legal expenses insurance of the families. Also, some children's hospitals offer free legal consultations with Procap, where parents can get an initial legal assessment of their questions free of charge on their questions.

Inclusion Handicap

The legal advice service of Inclusion Handicap offers people with Disabilities and their relatives and carers free of charge Legal advice and representation. These services are available to all Regardless of the type of disability and membership in an organization membership in an organization. The legal advice covers the following areas Disability equality and social security law.

Interesting links

Legal advice

Health Insurance Ombudsman Office

If there are problems with the mandatory health or supplementary insurance, insured persons can contact the Health Insurance Ombudsman's Office free of charge. This is a complaints and arbitration office.


The Procap Legal Service supports families of children with disabilities with questions about social security law and offers both individual advice (where and when to file social security claims) and legal representation can file) as well as legal representation.

Interesting links

Legal service

Legal advice center UP

The legal advice center UP for accident victims, insured persons and Patients is involved in the area of IV benefits (also liability claims, sickness and Liability claims, sickness and wages, etc.) and can therefore be a suitable Can be a suitable contact point for affected families. The services are subject to a fee.

Interesting links

Legal advice

How can I inform and prepare myself on the subject of inheritance and pension provision?

For relatives of people with a disability, many questions arise with regard to many questions with regard to inheritance. It is recommended that inheritance planning at an early stage and adapt it to the individual situation of the family. This includes an overview of the existing assets. Many important Procap provides a lot of important information in a summary leaflet. Have a look here and if you have any questions, please contact Procap or the above-mentioned legal Contact points mentioned above.

Questions - Alternative options

What options are there for families with a child with special needs when the financial resources from IV and/or health insurance are not sufficient?

In first and foremost, it must be checked whether all social security options have been exhausted. This usually requires specialist advice. In cases of great financial hardship foundations may be able to assume specific costs or make a participate proportionally.

Look for this at

Financial support options

Interesting technical articles from the KMSK knowledge books "Rare Diseases

1. KMSK Knowledge Book "Rare Diseases - Insights into the Lives of Affected Families"

Gabriela Blatter, Advocate, Legal/Equal Opportunities Specialist at Inclusion Handicap, umbrella organization of organizations for the disabled in Switzerland, Berne: "When all the talking is useless and the only option is to go before a judge"

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

Beatrice Leutwiler, Professional Adult Protection Advisor, City of Wetzikon: "Lack of knowledge transfer regarding Social benefits"

Irene Weber-Hallauer, Social Counseling University Children's Hospital Zurich: "Single parents often face existential financial difficulties"

Martin Boltshauser, Legal Services Procap, Member of the Management: "Early advice is the be-all and end-all O"

3. KMSK Knowledge Book "Rare Diseases - Therapies for Children and Support for the Family"

Stefan Michel, counseling center Stiftung Mosaik, Pratteln: "The most important thing is that the parents get advice immediately"

Roger Wicki, Team Leader Clarification Services Benefits, IV Lucerne: "An important contribution to more Independence in everyday life"

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

Stephanie M. Fritschi, owner, Schreibfee.ch: " Help in case of financial bottlenecks Bottlenecks"

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

Dieter Widmer, IV Office of the Canton of Berne:

Disability Insurance: Characterized by Complexity and Federalist Implementation

Martin Boltshauser, Procap Switzerland: Accepting help at an early stage pays off

Franziska Venghaus-Eisterer: AXA-Arag Legal Protection Insurance: Help in Disputes with the IV