Important laws and amendments to laws
Important laws and amendments to laws

Rare diseases - Important laws and checklists

Listed here are the current changes in the law and their application that may be relevant to our affected families.

Circular Letter on the Assistance Contribution (KSAB)

As of Jan. 1, 2022, there will be some changes to the assistance contribution. The adjustments mainly concern changes in the care and the night flat rate.

Link Kreisschreiben über den Assistenzbeitrag (KSAB) PDF

Legislation in the works - birth defect list update

The revision of the law "Further development of the IV" (WEIV) will come into force on 1.1.2022. The Federal Council and Parliament are thus pursuing the goal of further improving the disability insurance system, under the premise of strengthening integration and preventing disability. As conceived by the Federal Council, additional costs and savings balance each other out. One of the central themes of the revision is the more intensive monitoring of individuals and more intensive management in cases where a child or young person is affected by a birth defect and requires medical measures.

In particular, the WEIV updates the list of birth defects. It has not been revised since 1985. Thus, in certain areas, the list no longer reflects the current state of scientific knowledge. It contains not only obsolete terms, but also conditions that are not birth defects in the sense of the IV, because they can be treated easily or with little effort. In the future, the treatment of such conditions will be covered by the health insurance instead of the IV. Conversely, new conditions have been added to the list, in particular rare diseases that are considered birth defects.

Link to the revision of the law

Further information from the federal government

New federal law for family caregivers

The new federal law on improving the compatibility of gainful employment and caring for relatives was passed by parliament on 20.12.2019.

In order to highlight the new federal law for family caregivers, the Federal Chancellery has created this informational video on behalf of the Federal Department of Home Affairs together with the Friends of Children with Rare Diseases and one of our 600 affected KMSK families.

The 14-week caregiver leave for parents of children with serious health conditions went into effect July 1, 2021. It is the second package of measures under the new federal law on improving the compatibility of employment and family care, which was approved by Parliament in December 2019. The first package of measures already came into force on January 1, 2021, and includes the short leave of max. 3 days for the care of relatives (Art. 329h OR), the extension of care credits in the AHV (Art. 29septies AHVG) and the adjustment of the entitlement to intensive care supplement and HE of the IV for children during hospitalization (Art. 42bis para. 4 IVG).

"The new 14-week care leave for parents of children with severe health impairments is not a vacation entitlement. Caregiver leave is granted to parents who must interrupt their employment to care for their seriously ill or injured minor child. It lasts for a maximum of 14 weeks, during which they receive compensation equal to 80% of their OASI income.

A disability in itself is not considered a serious health impairment within the meaning of the law. Therefore, there is no entitlement to the care allowance if the health condition of the disabled child is stable. Parents of disabled children can only be entitled to the care compensation if the disabled child is acutely worse off. Therefore, a drastic change in his physical or mental condition must have occurred and the course of this change must be difficult to predict, or a permanent or increasing impairment or death must be expected. In addition, there must be an increased need for care by the parents and at least one parent must interrupt employment to care for the child.

Initial enrollment and for follow-up enrollment:

The initial application is to be completed by the "caregiver" except for items 6, 8 and 9. 6 and 8 are to be completed by the employer (employment and wage information). 9 is to be completed by the attending physician and is also considered a medical certificate. When submitting the form to the compensation office, it is necessary to indicate which parent receives the first day (in the comments field of the online tool, as there is no field for this in the form).

We have learned from the compensation office that the care credits do not apply to children with birth defects. Since the doctor does not have to write down what illness or aggravation it is, we suggest to submit the application Then wait and see what the compensation office thinks. (However, reference days will be compensated only from the beginning of the law's validity, i.e. from 01.07.2021).

There may be changes already next year, because the form is not fully developed and the whole process is still very "stretchable".

Link to the new legislation

Link Video German

Link Video French

Link Video Italian

Questions/answers for family caregivers

Caregiver leave guide for parents

Legal basis and financial framework to ensure care in the field of rare diseases

The National Concept for Rare Diseases, adopted in 2014, was the Federal Council's response to Postulates 10.4055 "National Strategy to Improve the Health Situation of People with Rare Diseases" and 11.4025 "Hardship Commission Health".

Link legal basis PDF

Link legal basis