Children with multiple disabilities who cannot live independently are protected by the social welfare system from birth. However, once they turn 18, they enter a kind of legal vacuum. At that point, standard parental care formally ends, while a new form of guardianship often comes into effect only after a lengthy procedure. During this interim period, parents are not legally permitted to make important decisions about treatment or social rights for their adult children—even though, in practice, they continue daily caregiving.
The entire process to officially deprive an individual of legal capacity and appoint a guardian typically takes two to three years. During this time, families exist in a state of uncertainty, complicating a range of medical and administrative procedures. Consequently, people with serious or complex diagnoses may be left without effective legal protection, while parents are practically barred from giving consent for treatments or therapies.
Another concern is broader security: it can be impossible to take official action on behalf of an affected adult if a legal guardian is not in immediate contact with the person needing protection. Many observers thus call for laws ensuring continuous custody or an automatic mechanism by which parents can retain the right to represent their child legally after age 18. Such measures would close the multi-year gap that frequently arises, preventing families from making vital decisions about the health and lives of adults with multiple disabilities.
