Dag Erik Engdal Berntsen (25) loves music. He is a big fan of both Iron Maiden and DDE
Thanks to his mother Trine, he has been able to attend several concerts with his favorite bands, and experienced more than other people with cerebral palsy (CP) may experience.
Single mother Trine Engdal has lined up before her son all these years. Photo: Ingrid Wollberg / TV 2
– We fill up the memory book. It should be so thick that when he stays seated and can not bear to participate in anything more, he can flip through it, and know that he has experienced a lot, and not been trapped in an apartment all his life, Trine Engdal explains.
She has to show up for her son both day and night. And it can sometimes be tiring for the single mother in addition to a full-time job. Trine explains that in a way she has two full-time jobs.
– I just have to say that I’m really tired at times. You stand like a rubber band and are pulled between several places.
But even though Trine Engdal is tired, she is also very clear that they live a good life, and that it is not Dag Erik who is the problem, but the system.
– We are very well. It is not his disability that is the problem. It is the system that is tiring. Dag Erik is just funny, and it does not matter to me that things have to be done a little differently and that he needs a little help with things.
A survey from the CP association conducted in mid-2021, shows that around 70 percent of Norwegians with cerebral palsy lack follow-up after the age of 18.
The survey shows that 63.2 per cent of adults with CP are dissatisfied or very dissatisfied with the transition from child to adult habilitation.
– CP is a lifelong course, you get worse and worse the older you get and as the pain comes. It becomes a kind of wear and tear, because you use the body more than others would have done, so that is why it is so important with good follow-up, Trine Engdal explains.
Dag Erik was born with a heart defect.
As a result, he suffered a stroke that led to Cerebral Palsy.
Dag Erik is very grateful for all the help he receives from the family, and thinks it is terrible that many others with the same condition as himself, or worse, sit a lot at home alone.
– The politicians only see my limitations, and everyone else with their CP. I’m more than a financial brake.
What is cerebral palsy?
- Cerebral palsy is an injury to the brain that can occur from early fetal life until one is two years old.
- The damage affects the brain signals that are sent out to the muscles in the body, in addition to the signals that are sent the other way, from the body to the brain.
- The extent of the damage and its location in the brain affect the outcome of cerebral palsy.
- The muscles will not obey as normal due to disturbances in the “central” (brain), and this affects the movements in the body. The brain also does not get the right signals back about exactly where the various body parts are located.
- About 2 out of 1000 children born in Norway have or get CP. That is, about 120 new cases each year.
– Serious call for inadequate services
The aim of the Cerebral Palsy Association’s membership survey was to get answers to what kind of wishes and experiences their members have with specialized habilitation services. The results worry Secretary General Eva Buchmann.
– What we get in response is a serious call for inadequate services.
She further explains that the problem is about too large variations. According to Buchmann, a significant upgrade should be made.
– We lack national guidelines. We do not have a package process. There is too little research. There are many development steps that need to be taken in these services. And this is first and foremost about resources, ie money. And that is a political responsibility.
State Secretary in the Ministry of Health and Care Services, Karl Kristian Bekeng says that this is now one of the main priorities of the new government.
– More resources are now being directed. The municipalities have been significantly strengthened in our proposal for a new state budget. We also want to strengthen the hospitals in the future. Strengthening collaboration funding. In other words, funding for patients who move between services is a priority for this government.
Bekeng says that the government is working to strengthen the management and organization of the habilitation and rehabilitation field.
– In addition, we are working on several tracks to strengthen the interaction between, among others, the municipal health service and the specialist health service.
Depending on others
Him Christian also has cerebral palsy.
He hopes for changes that can give him a user-controlled personal assistant.
Ham Christian Daosai (23) has a stronger degree of CP than Dag Erik, and is an active boy who loves to be social. He currently lives in a care home on Askøy, where he receives help with daily care and cooking. Joint excursions are also arranged, but for Him it is still not enough for the life he wants.
– What do you wish a user-controlled personal assistant could contribute?
– To go out more.
Him Christian spends a lot of time alone at home in front of the screen. Photo: Ingrid Wollberg / TV 2.
Ham Christian depends on other people to get out. Therefore, he has a strong desire for a user-controlled personal assistant. He has previously applied to the municipality for this, but was rejected.
– We applied in October 2018, and it took Askøy municipality 8 months to give us a rejection, which we think is bad. Then we submitted a new complaint and finally received a final rejection by the county governor in 2019, explains his friend Rune Soltvedt.
That is why Ham Christian is grateful to Rune Soltvedt, who regularly takes him on things. The two became friends when Ham moved into Rune’s neighborhood many years ago.
But if Ham wants to take a trip to the cinema, go out and have a beer on a nice summer day, or just to come here today, then demand that I take time off from work.
The 23-year-old’s condition of cerebral palsy leads to paralysis of the tongue, and because Ham Christian has a strong degree of CP, it is difficult for him to talk. Therefore, he brings Rune with him to the interview, which can elaborate a little for him.
– Everyone should get help, says Ham firmly.
– It is simply a matter of everyone being allowed to be individual people. Do what we want, when we want it. Be allowed to do the simple things that the rest of us take for granted, Rune explains.
– It is about investing more in intensive training and habilitation. But what our members are calling for is not really such a big deal. They simply want to be seen. To be followed up, to get the help they need along the way, says Eva Buschmann.
The mayor of Askøy Municipality, Siv Høgtun, can not comment on individual cases or decisions that have been made, but says the following:
– Of course, it is not pleasant for me to think that there are residents alone who need to get more out, but at the same time I have to relate to the professional assessments that have been made based on the criteria sets that exist.
Furthermore, she thinks it is very positive if the municipalities receive larger transfers to health services.
– But if these are earmarked funds for the BPA scheme, then I also hope that the government looks at the allocation criteria that have been given, so that the municipality gets new guidelines for allocation. As long as the allocation criteria are kept unchanged, the framework for what triggers BPA will remain unchanged even if the municipalities are provided with increased limits.
Lottery draw in life
Both Dag Erik and Ham Christian are positive young men, who focus on what they can achieve with the cards they have been given.
– Now I have not won any lottery when it comes to life, says Dag Erik, before he thinks about it and continues:
– But yes, I have in a way done it too.
Trine Engdal explains that it is important to preserve the quality of life, no matter what challenges you have.
– You choose not to get the ailments or challenges you have, I think they should be able to live as good a life as possible they also, with quality of life, not just stored.