The case in summary: Kaisa (5) has a rare gene defect and several diagnoses, including atypical autism and severe mental retardation. Her family is dependent on help in everyday life, including regular night shifts and respite at Lillebølgen housing and treatment center. Her parents, Ingvild Hajum and Morten Øvland, are worried that they may lose these services if their part of the municipality, formerly part of Songdalen, becomes a separate municipality again. The family has previously applied for BPA (user-controlled personal assistance) to Kaisa at weekends and holidays, but has been refused by the municipality. Ingvild Hajum believes that the solution does not lie in reversing the municipality, but that the municipality has a long way to go in relation to budgets and allocation. The summary is made by an AI service from OpenAi. The content is quality assured by news’s journalists before publication. – Kaisa can walk and looks healthier than she is, but she has an understanding of risk at the level of an 8-month-old baby, says Ingvild Hajum. In the living room at home in Finland, on the very edge of Kristiansand municipality, Kaisa (5) is about to go out the veranda door. The mother hurries over. – No, you can’t go out here! The daughter has a rare gene defect of which there are only 12 other known cases in the world. She also has several diagnoses, including atypical autism and severe mental retardation. The family, which also has a seven-year-old older sister to look after, is therefore dependent on help in everyday life. Finsland was formerly part of Songdalen municipality, but now belongs to Kristiansand. Ingvild and his roommate Morten Øvland are afraid of losing the services they have if Songdalen becomes its own municipality again. – Having the predictability we have today is important to us. We think that a small municipality will be very vulnerable, says Ingvild. Kaisa and mum Ingvild have a close relationship. – She is extremely loving and is very fond of “her” people, says the mother. The family has made a small note for the night guards which hangs on the wall in Kaisa’s room. By Kaisa’s bed is a device that measures heart rate and saturation and a feeding pump that is used at night. – Became part of the family When Kaisa was two years old, it became necessary to monitor her when she sleeps. The family today has regular night guards who are with them from 10pm to 7am. In addition, the 5-year-old has respite at the Lillebølgen residential and treatment center in Kristiansand one night a week and every third weekend. The mother brags about the night guards who come to their home and the employees at Lillebølgen. – They have become part of the family, and if a night watchman falls ill, Lillebølgen fixes a substitute. It is a relief for us to feel that way. If Songdalen becomes a separate municipality again, the family risks losing the offer they have at Lillebølgen. According to municipal manager for administration and coordination Lisbeth Bergstøl in Kristiansand municipality, there are many users who wonder what will happen to their services if the municipalities are split up again. – Those who live in smaller municipalities have received more comprehensive and robust offers, but we ourselves are unsure of what will happen to these in the future. We have not started working on this, says Bergstøl. Ingvild’s little sister Sigrid Arnestad (26) helps when Ingvild’s partner is on a work trip. Kaisa loves her aunt. Photo: Heidi Ditlefsen / news The municipality: – Unsure of what will happen Ingvild emphasizes that they are not only satisfied with the offer they receive from Kristiansand municipality. Among other things, the family has applied for BPA for the daughter at weekends and holidays, but has been refused. The municipality believes that Kaisa’s need for care is not great enough. – The municipality has a long way to go both in relation to budgets and allocation, but the solution does not lie in reversing the municipality, believes the 36-year-old. Regarding the BPA rejection the family has received, municipal manager Bergstøl says that it is difficult to comment on an individual case. – We have schemes with various solutions for BPA and if they have been refused, they always have an opportunity to appeal. Can’t be alone with both At home in Finland, it’s lunch time for Kaisa. She gets all food and drink via a button on her stomach. The meals take a lot of time. Being at home alone with both daughters does not work. – Kaisa is the world’s finest young person, but she needs her entire everyday life to be adapted to her around the clock in order for her to feel good, says Ingvild. Ingvild Hajum says that the family has weekly contact with other parents all over the world who have children with the same genetic defect. Photo: Heidi Ditlefsen / news Kaisa’s second home news meets the family on a Tuesday and on that day Kaisa always travels to Lillebølgen. There she is on relief until Wednesday. Ingvild says the Little Wave is the best thing that has happened to the family since the 5-year-old was born. – It was like having an extended family that knows this rare, small, strange kid as well as we do. We can spar and throw a ball with them. At Lillebølgen, Kaisa has her own room waiting for her. A total of 14 children are associated with the relief institution. Once there, Kaisa runs into her room at the end of the hall. – Lillebølgen is Kaisa’s second home. She loves being here, states the mother as her daughter throws herself up in bed. Kaisa is comfortable in her room at Lillebølgen. She shares it with two other children who are there on other days and weekends than herself. Kaisa is fed by healthcare worker Mette Edvardsen. She says that Kaisa loves to sit in the swing in the living room and in the rucksack. Mamma Ingvild says that the first thing many people say to her is that Kaisa is a little fool. – She is actually very social to have the diagnoses she has, says the mother. Now the family is crossing their fingers that they still belong to Kristiansand municipality when the vote is over on 2 February. – What do you do if you lose the offer you have today? – No, then we would have moved to Kristiansand. We cannot lose Lillebølgen or the night service, says Ingvild Hajum. Hello! Did you think of anything in particular when you read this story or have any tips for something else I should write about? Feel free to send me an email!
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Family fears losing their daughter’s offer if the municipality is dissolved – news Sørlandet – Local news, TV and radio
