Families of severely ill and disabled children receive unequal support depending on where they live

Support for families with children suffering from rare, life-threatening illnesses has deteriorated across Finland since the introduction of wellbeing services counties in 2023, according to Janne Vartiainen, a special family worker at the Finnish Association for Persons with Intellectual Disabilities.

Vartiainen, who has worked for over a decade at the Rare Disease Center Norio and assisted dozens of families nationwide, reports that the most severe issues affect families of children with serious disabilities or illnesses. While some wellbeing services counties have improved services, many have seen a decline compared to the pre-reform period.

In a recent case, a Kuopio family with a severely disabled child was granted only 20 hours of monthly short-term home care by the North Savo Wellbeing Services County. The Eastern Finland Administrative Court ruled in December that this decision violated the law and that the allocated hours were insufficient. Despite the ruling, the county has not revised its decision.

Vartiainen describes the treatment of the Kuopio family as exceptional even by national standards, noting persistent difficulties in North Savo in establishing good communication with families. He also highlights self-imposed restrictions and delays in decision-making by the county.

Families increasingly find themselves forced to appeal decisions to access the services they are legally entitled to, a process Vartiainen describes as lengthy and exhausting. In some cases, he suspects delays are intentional, aimed at wearing families down until they abandon their claims.

Vartiainen attributes the deterioration of services to budget cuts, stating that severely disabled and ill children have been among the first to bear the brunt of austerity measures. The North Savo Wellbeing Services County declined to comment on the specific case, citing patient confidentiality, but maintains it complies with the law.

The Kuopio family at the center of the dispute has announced plans to relocate to Lappeenranta, hoping for better support in South Karelia.