Family course for children with congenital malformations or developmental disorders

Kela arranges family courses for children with congenital malformations or developmental disorders. The adaptation training is multidisciplinary and group-based.

At the course, the child and the family are provided with support to manage problems in their daily life and help to handle the situation. The aim of the rehabilitation is to promote functional capacity, life management and self-care skills. At the course, the family is also given information about the condition or disorder from which the child is suffering and about rehabilitation practices and support networks available in their area. 

The family course is suitable for children

• who have been diagnosed with a congenital malformation or developmental disorder and who are in need of multidisciplinary rehabilitation
• who are in lower secondary school or younger (over the age of 1)

Family courses are arranged for children with

• Intestinal disorders, for example
  • anorectal malformations
  • Hirschsprung’s disease
  • Gastro-intestinal malformations
•  Osteogenesis imperfecta
•  Bone dysplasia, for example
  • Osteochondrodysplasia
  • Mulibrey nanism
•  Developmental skeletal or joint disorders, for example
  • Arthrogryposis multiplex congenita (AMC)
  • Muscle and bone malformations
  • Dysmelia
  • Clubfoot
• Hemifacial microsomia or other developmental facial deformities, for example
  • Pierre Robin syndrome
  • Treacher Collins syndrome
• Craniosynostosis
• Other congenital malformations or developmental disorders, for example
  • Erb’s palsy
  • Congenital malformations (of the genitalia, or of the nervous or respiratory system)
  • Marfan syndrome
  • Moebius syndrome
  • Sotos syndrome
  • Brain or spinal cord abnormalities
  • Rare growth retardation
  • MMC syndrome
• Congenital malformation of the urinary tract or bladder dysfunction

Courses for all target groups may not be arranged every year. For children with a very rare condition, a joint course can be arranged.

Purpose of the course

The aim of the course is to provide comprehensive information and guidance for the child and the family, and to enable them to continue to live a full and meaningful life despite the child’s condition or disorder. Rehabilitation is also a way of strengthening the family’s resources and life management skills as well as a means of providing support for the family and its support networks. It also provides opportunities to meet other families who are in a similar situation.

Content of the course and implementation

The rehabilitation is implemented as group rehabilitation taking each child’s and family’s individual goal and need for rehabilitation into consideration.

The course includes group discussions and working in small groups, a variety of activities as well as individual interviews, meetings and discussions with rehabilitation experts.

The rehabilitation is arranged on the service provider’s premises. The course lasts 5 days.

The child’s family accompanies the child throughout the rehabilitation. 1 to 2 adult close relatives and up to 2 siblings participate in the family course. If the number of siblings wishing to participate in the course exceeds this, Kela will contact the service provider in order to decide and agree on practical matters and make sure that there is sufficient room for all. The family can stay overnight at the place of the rehabilitation or travel there from home each day.

Course personnel

The course is implemented by the following experts:

• specialist in children’s diseases, pediatric surgery or plastic surgery
• registered nurse or public health nurse
• physiotherapist
• social worker, Bachelor of Social Sciences, rehabilitation instructor or Master of Social Sciences (major subject rehabilitation science).

Depending on the child's individual needs, other rehabilitation professionals and assisting personnel may also take part.

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