Løvemammaeneen's input to the cross-sectoral supervisor

As promised, the Løvemammaene have delivered a comprehensive written input to the new supervisor "Cooperation for children, young people and their families". There has been a great deal of involvement around the children's coordinator and many have asked for Løvemammaeneen's opinions. Our input ended up with no less than 35 pages.

Below you can read the entire input. You can also download our input as a PDF at the bottom of the article.

Written input to the cross-sectoral supervisor – Cooperation on services for children, young people and their families

The lion mothers' central concern about the supervisor:

The new supervisor and children's coordinator system is unfair to the municipalities and parents who have had to grope blindly, and will continue to do so in the absence of a guiding supervisor. As the guide is now, it is not going to help the families concerned to a sufficient extent. The supervisor focuses a lot on uncovering neglect. The child coordinator should not be an extended arm of the child protection service, but an independent coordinator who should be able to work across all services around the child.

Parents need information about rights and offers, as well as help and enough services right from the start. They need real user participation and a municipality that asks: "What do you need to live a good life?»

We need, among other things, a coordinator who makes contact and is available, a coordinator with personal experience who has experienced it himself or who has very good abilities to understand the situation. The coordinator must show loyalty to the families – someone who stands by the family, sees solutions, preferably a combination of different services, and acts as a mouthpiece into the municipality and other support apparatus on behalf of the family.

If the guide is to be a map that works, it must be able to describe the terrain it applies to. The Lion Mothers are therefore seriously concerned about the shortcomings in the guide, which is about:

Children and young people with serious, complex and demanding conditions.
Case descriptions that show the diversity of complexity in follow-up.
Diversity within the range of situations that are considered to be just within or outside the right of the child coordinator.
Exemplification of how the municipality should deal with decisions about needs where the situation is characterized by being unclear.
Cooperation with the specialist health service. The municipality has a particular responsibility to arrange for children and young people who have been hospitalized for a long time to return home when possible, with the necessary follow-up.
Duty of cooperation and coordination, possibly a child coordinator in case of serious absence from school.
How is a coordination responsibility or the role of a child coordinator, which ensures a certain quality where there is a level of conflict between service providers and families, handled.

Fine formulations about better welfare services, municipal units that coordinate coordination and child coordinators that are not allocated time or resources to actually make the difference for the families that the change in the law aims to make, do not give any family a better everyday life where things works together.

1. Introduction – Cooperation for the best interests of the child

Target group for the supervisor

"The target group for the supervisor is the welfare services that are covered by the changes in the law and are aimed at

municipality, county council, state and private actors as service owners
managers and employees in services and sectors involved in the follow-up of children, young people and families
children, young people and their families"

One of the target groups for the supervisor is children, young people and their families. The way the guide is designed, also based on the nature of the guide, several technical expressions, formulations and legal references are not suitable for children. Children and young people will not have the opportunity to understand the content of the guide. The Løvemammaen believe that it can be arranged so that the tutor is adapted to the entire target group. This can be done by explaining the content and meaning of each topic, initially in the chapters, e.g. in a rubric that is easy to locate for children and young people.

It is problematic that the biggest partner for many families is the specialist health service, which is not specified in the guide as a natural partner. This is in view of the fact that children who, according to by law has the right to a child coordinator, must also have a need for health and care services. If the children have the right to this, it is natural to think that the specialist health services follow up the child to a greater or lesser extent. In cases involving seriously ill children and children with palliative conditions, cooperation with the specialist health service is completely dependent on the child being able to live at home, as the families often run small home hospitals in the children's home municipalities.

It appears relatively problematic for children, young people and their families to orient themselves in the guide, as it has few case examples, and to get tips on how to enter search terms in the search field.

There are major municipal challenges in the fact that the supervisor is heavily influenced by the child welfare services as the current service provider. At the same time, there are very clear currents in favor of clearing up the role of child protection services in cases of serious school absence. Little is revealed about what are alternative bodies and the need for coordination.

A search for "school absence" or "school refusal" gives 0 hits in the search field on the tutor. Many children and young people who are covered by the changes to the law that have been introduced struggle precisely with school absence, either as a complication or consequence of conditions they have, or as a decline in function in itself. In order for these children to be met with the provision they are entitled to, it is important that this is a natural theme in the tutor, as provision on several levels is important to give these children an opportunity to participate in a learning environment. There are also no case examples of neurodivergent children, child palliation or multi-function variation. In Løvemammaene, we often get feedback that our children are so "special and rare" or that "what you're saying now probably won't happen". But these are our children, and they are complex and unique, but we are a large group together, and the systems must take into account that they must also be able to accommodate the actually complex without marginalizing the children as "too special".

The Convention on the Rights of the Child in the proceedings

The lion mothers believe that "the best interests of the child" and the Convention on the Rights of the Child must be made clear throughout the guide, and not just in a heading at the beginning, and then to find words and paragraphs in some places in the guide. By clarifying the Convention on the Rights of the Child through the guide, you also make it clear where the target group for the guide should be focused.

The Child Protection Convention requires that case management must be efficient, child-friendly and easily accessible (UN Children's Committee 2013). That is to say:

Effective: safeguarding the child's best interests in the proceedings means, among other things, that it must not take too long. Children have a different perspective on time than adults and it can therefore be harmful for the proceedings to drag on.

Child-friendly: The proceedings must be such that the child has the opportunity to understand what is going on. Child-friendliness requires the use of a form of language that children understand.

Easily accessible: In order for children and young people to have their rights safeguarded, enforcement and complaints arrangements must be known and accessible to them.

Children and young people's voice - involvement and participation

It is pleasing that the child's voice comes through clearly. However, there is a need to also mention other places where the child's voice is to be heard over IP, such as expert assessment (PPT), IOP (school) and in case management of public services (health and care services), so that the supervisor models how this voice should come through all the way through documents concerning the child or young person.
It must also be made clear in the tutor that parents become the child's voice where the child himself does not have verbal language, or because other circumstances cannot communicate. It should also be in the municipality's interest to help those children get the opportunity to communicate so that the child's voice can be used as intended. The coordinator role must therefore undertake that early efforts are put in place for children in need of ASK (alternative and supplementary communication) as those children are currently caught between two chairs and are not given a language to communicate with.

The child's best assessment

The guide lacks key references to the Convention on the Rights of the Child, including articles 13, 23 and 24, which include essential aspects of the legislation that the guide covers. Note how Article 13 sets clear guidelines for how diverse the hearing of the child's voice can be. Furthermore, relevant extracts from the articles follow. The articles in their entirety follow by reference under:

Article 13 on freedom of expression and information

1. The child shall have the right to freedom of expression; this right shall include the freedom to seek, receive and communicate information and ideas of any kind without regard to borders, whether it occurs orally, in writing or in print, in artistic form or through any means of expression the child may choose.

Article 23 functional variation (disabilities)

1. The parties recognize that a child who is mentally or physically disabled should have a full and decent life under conditions that ensure dignity, promote independence and contribute to the child's active participation in society.

2. The parties recognize that children with disabilities have the right to special care and shall, within the framework of the means available, encourage and ensure that children who meet the conditions and children's carers receive the help they have applied for and which is reasonable in relation to the child's condition and the situation of the parents or other carers.

3. As it is recognized that disabled children have special needs, help provided in accordance with No. 2 shall be provided free of charge when this is possible, while the parents' or other carers' finances are taken into account, and the help shall be arranged so that disabled children have effective access to and receive teaching, training, health services, rehabilitation services, preparation for working life and recreational opportunities in a way that best possible promotes the child's social integration and personal development, including its cultural and spiritual development.

Article 24 on health

1. The parties recognize the child's right to benefit from the highest attainable health standard and to treatment options for illness and rehabilitation. The parties must endeavor to ensure that no child is deprived of their right to access such health services.

2. The parties must work for the full implementation of this right and must in particular take appropriate measures to:..

..f) develop preventive health care, parental guidance, and teaching and services in family planning.

Complex challenges

The cooperation provisions in the welfare service laws are an attempt to solve a stubborn problem. But the case descriptions in the guide do not refer to a multitude of complex challenges. The lion mothers see a need for more reality-oriented examples of the challenges faced by the families to whom the changes in the law will apply.

It is also becoming clearer and clearer that many municipalities are not equipped for medical science to make great progress. More and more children who previously did not survive are being rescued, and more seriously ill children are therefore coming home to their municipalities to live with their parents and siblings. Parents are trained to carry out life-saving and essential treatment for their child at home. Following up on all the child's needs both on a medical, emotional and developmental level is an all-consuming task. We are talking about children who live their lives connected to IV tubes through central venous catheters, children with a tracheostomy, breathing support, stomas and seizures of an acute nature. These families run small hospitals in their own homes where they themselves are both parents, nurses, physiotherapists and educators. They cannot leave the child at all or let them out of their sight. Several of these children depend on procedures being carried out in the event of complications where two people must be present to carry this out. As of today, you often see that one of the parents is tied to the house at all times. Many municipalities do not have procedures and sufficient training to stand in these situations even for a real relief. We often hear about parents who have a greater delegation of medicine than the health personnel have, because the parents are always present, and have a greater knowledge base through experience and follow-up by the specialist health care provider to make these assessments on the right basis than an employee who works 2-3 shifts in during a week.

Children with complex and long-term medical needs are completely dependent on a well-functioning common area, for interaction across and between levels of services and professions. However, it is absolutely crucial that the treating body that knows the child's needs best is given the position of guiding body for others in the service network, so that the quality of services reaches right up to the child where the child lives his life. Here we would like to clarify that it is important that the specialist health service's role is defined, and that the importance of taking advantage of the expertise and experience they have is made clear. The coordination must ensure that at municipal level people do not take a stand in isolation on what the municipality itself thinks is best.

Proposal for wording in supervisor:

Families who have children with major, complex challenges, including those of a complex medical nature, are dependent on the specialist health service's advice on what is needed for the services to be responsible around these children. The municipality must receive and follow up guidance from the specialist health service, because the specialist health service has greater expertise in these children than the municipality has.

Regarding children in palliation, and transition to the terminal phase and child deaths:

As the situation is now, far too many families are still left alone when a child is about to die. Families who are at home are left without sufficient interaction between specialist health services, the municipality and home. Under the municipality's responsibility to ensure services, we point out in particular that healthcare in the home with specialist expertise must be a right included in BPA. It is also important to have a right to be able to cover the child's assistance and health needs in everyday school and kindergarten with own BPA assistants. This will contribute to real freedom of choice in services and form the basis for continuity, safeguarding the child's best interests and ensuring quality in the child's medical follow-up.

The child's terminal phase and the crisis this represents should also have a separate focus when it comes to opportunities to be at home. Here we are particularly thinking of the enormous responsibility that falls to parents alone, if there are no highly coordinated and competent support services close to the child. In this phase, it is therefore important to have a 24/7 contact option with the team working around the child, and a notification function in the municipality.

Parents must gain access to knowledge about what terminal signs are, and how a terminal phase can develop. A comprehensive medication plan is needed with correctly calculated doses and available medications, especially in the area of pain relief. Parents must also be offered support to design what is important and valuable to them as points in an action plan when the child dies and in the days afterwards.

After the child's death, very few receive any form of bereavement support or follow-up, neither for themselves as parents nor for siblings. Parts of this follow-up should be added to children's palliative care teams at the regional hospitals, but then these teams must have the capacity and interdisciplinary expertise to meet this need.

The municipalities, in collaboration with the regional children's palliative care teams at the hospital, must work closely together to ensure comprehensive follow-up. But it is also important that the municipalities build competence in this area, as there are far more people than the nuclear family itself who are affected when a child dies. Larger municipalities are recommended to establish their own children's palliative care teams, as Stange municipality and Stavanger municipality have done, among others. For smaller municipalities, inter-municipal cooperation may be relevant and otherwise the municipalities' crisis teams must receive training and competence to be able to deal with such situations. In this way, the municipality's crisis team can be a resource for both families and employees in the municipality who are affected when children die.

Suggestions for case descriptions:

Case 1: Children who have medical needs that require special training of personnel

Sofia lives with her mother, father and two siblings. A rare condition affecting the intestines means she is dependent on TPN (intravenous nutrition). She receives this in a central venous catheter. The condition also means that Sofia has a lot of pain in her body, and she therefore also sleeps poorly at night.

The parents find that they do not have time for Sofia's two siblings. The youngest goes to kindergarten, while the older brother goes to secondary school. The brother, who has always been an introverted and quiet boy, has had delayed reactions as a result of a series of acute incidents in which he has seen Sofia become very ill and brought in by ambulance. He is now struggling at school with anxiety reactions. Little sister who goes to kindergarten is a more active and outgoing person.

The family feels completely locked up at home, because Sofia needs round-the-clock follow-up with her health challenges. Mother has to take responsibility for much of the meetings and interaction, as Sofia's father is French and speaks Norwegian and English poorly.

There are many concrete challenges that the family faces today:

- Sofia needs an examination for epilepsy, because she has started to have seizures.

- The home they live in is not suitable for housing three children, and a child who needs a lot of medical equipment.

- Big brother needs follow-up for his anxiety problems, but the health nurse at the school is on sick leave without a substitute being appointed.

- The regional hospital's home hospital does not reach where Sofia lives on the outskirts of a municipality.

- Sofia is little at school and needs to change teaching to home teaching. There is a need for a well-planned training offer that takes the necessary infection control into account.

- The parents wonder if Sofia has the aids she needs that can take care of a growing need for energy saving, while she still enjoys going out with her parents and siblings when she can bear it.

The family has asked for a child coordinator, and a plan for the terminal phase, a contingency plan for the parents falling ill. They have not been able to talk about the fact that Sofia has a diagnosis that falls under the concept of palliation, but now they have become members of a user organization that has helped them to understand the importance of being active in this process, so that they can decide as much as possible about his own life and the end of Sofia's life when the time comes. The parents are dreading the next responsibility group meeting because there has been a conflict with the case manager in the municipality which makes the meetings difficult.

Case 2: Children with compound, unresolved and complex challenges – multifunctional variation

Lise lives with her mother, father and older sister. In the months after Lise was born, only parents were concerned about the lack of progress in development. Lise lagged increasingly behind her peers motor-wise and made little eye contact. Only when Lise was 1 year old did investigations begin in the specialist health service and more diagnoses came the following year; autism, complex and complex epilepsy, severe mental retardation and finally a rare, progressive gene defect. Lise sleeps very little, and is awake for up to 6 hours continuously every night. Lise's behavior at night requires that one of the parents is with her all night, and is awake when she is awake.

Lise spent the first 5 years in constant emergency admissions, where her older sister witnessed an ambulance and a doctor at home, several times a month for years.

Mother stays awake at night to detect Lise's epileptic seizures before they go into state. They do not trigger the alarms that have been received as aids. During the day, both parents go to work, while Lise and older sister are in kindergarten.

There are constant admissions at the largest hospitals in Norway, there are new investigations and new findings. It is the mother who interacts with the specialist health service and routines are drawn up for handling status epilepticus, satiety and contact with emergency medical help. The only link between the specialist health service and the other support apparatus in the municipality (health and care services, PPT, kindergarten, health nurse, physiotherapist, occupational therapist and more) is the child's mother. It is the child's mother who passes on all routines from the specialist health service to the municipality.

Lise's gene defect is the reason why her feet suddenly develop in the wrong position and the need for home adaptations and aids such as e.g. wheelchair comes forward. No doctor can explain with certainty what is happening, or what skill or function is next on the list. Parents are asked to work to maintain as many skills as possible in all areas of the child, as these will not be possible to resume at some point. At the same time, everyone around the child is observant at all times for possible changes so that incipient losses are detected as early as possible.

Parents are very tired, and work hard to maintain some form of everyday life. One parent must always be with Lise and there is little communication between the parents.

Case 3: Several children in the family with challenges

Mikkel is born with a serious illness and ends up undergoing examination at the hospital. After a few weeks, genetic tests, MRI, spinal tests, blood tests, etc. reveal that he has a rare and serious muscle disease. You cannot know, or promise, that the child will grow up. Over the years, Mikkel needs more and more help with breathing, and at the age of 2 he is operated on with a tracheostomy (breathing tube) connected to a ventilator 24/7. He needs help with everything, has to have physiotherapy every day, is fed through a button on his stomach and has no verbal language. When Mikkel is 2.5 years old, he gets a little sister, Maja. Maja must be born by caesarean section as everything around Mikkel must be planned. You can see that Maja was born a little too early and therefore has undeveloped intestines which give her colic pain for the first 6 weeks and reflux with vomiting for over a year. You can also see that she has undeveloped lungs which means that she has false croup, is often ill and at the age of 1 is diagnosed with childhood asthma.

Mikkel needs a lot of follow-up and that his mother is there for him all the time. He gets a decision on BPA, but the mother has to fight to get enough BPA hours both to give Mikkel a dignified and safe life, but also to have time to follow up on Maja.
The municipality's solution is to place Mikkel in a children's home for 6 years, which the mother constantly refuses and applies again and again for more BPA hours.

Mikkel never gets a nursery offer, as the municipality does not have a suitable place that is safe enough for Mikkel. The municipality is also not willing to let his BPA assistants accompany him through daycare. He will only get a connection with other children when he starts school. Maja, on the other hand, is offered a nursery school, and arranged with support contact from the municipality when it is seen that she is not enjoying herself.
Eventually, Maja develops a behavior that her mother becomes concerned about and takes her to the health centre. You will be informed about BUP, and a referral will be sent.
In order for mother to be able to accompany Maja to BUP, she has to constantly play tricks with BPA assistants and take away hours at another place to be able to leave Mikkel. This is taking a toll on the mother and it has now taken many years of puzzling to get her life back on track.
At BUP, it turns out that Maja has some challenges with adaptation and emotion regulation. The municipality never asks how mother is doing, how Mikkel is doing, or how Maja is doing. The question "what can we do for you" is never asked. When the mother requests that Mikkel also get an offer at BUP to have the opportunity to talk about having a sibling who can run, swim, cycle and play with friends, or about his illness, and maybe even ask about death. In response, the mother receives that BUP cannot make an offer to Mikkel as he cannot speak with his mouth.
At the same time, BUP closes the door on Maja, thinking that the school can take over. She is referred again and again for both school refusal and food refusal and again receives an offer. But as soon as Maja blossoms, BUP closes the door and believes that the municipality's low-threshold offer should be good enough. However, the mother has never seen or heard of any low-threshold provision in the municipality, and is repeatedly told to refer her daughter to BUP.

Mikkel and Maja's parents separated when Maja was under a year old, when they had become completely exhausted from not getting enough BPA lessons for Mikkel, and that it constantly felt like a fight against the system. Mother then became the sole breadwinner, and father is in the picture from time to time. Mother has no opportunity to know how she really feels. The coordinator they have had since Mikkel was small is good and caring and is always on "the family's side". But the mother had wanted the coordinator's voice to have authority in case management about the child and the family's needs and that she could relieve the burden of all coordination around the children.

Case 4: severe school absenteeism and neurodivergence

Cecilie goes to secondary school in the 8th grade. She has a long-term absence from school that has persisted since elementary school. She has now been examined by BUP, which has concluded with the diagnoses of ADHD and autism spectrum disorder.

Cecilie's parents notified the school in transition to 5th grade that it was often difficult to get her out the door and to school. They had to persuade and drive her themselves, and follow her into the hallway to the school. During the next two years, she was often at home with diffuse aches and pains in her stomach, often for days and weeks on end. She had less and less contact with fellow students in the class and during the corona epidemic she was mostly with her family. After the reopening of society and transition to secondary school, she has had increasingly demanding tantrums, and she says she would rather die than go to school. She does not know any teachers well, and has refused to accept any visits from teachers at home. The parents want her to get an AV1 school robot that is covered by the insurance, but the principal refers to privacy and refuses to accept the offer of a robot. PPT received a referral in the 6th stage, but waiting lists and delays with expert assessment pending an investigation at BUP have meant that she has not had either an expert assessment, a single decision or an individual training plan in the past. The parents wonder if they have the right to a child coordinator, and want an individual plan. They have had several conversations with the public health nurse, which was useful in the beginning, but now the public health nurse feels that the difficulties and complexity exceed her level of competence. She has therefore withdrawn from active follow-up, and hopes someone else can take on this responsibility.

Case 5: Multifunctional variation. Health needs. Complain about shuttle daycare

5-year-old boy born blind. Lacking the sense we use in all the different situations we are in throughout the day. We get easily accessible information via the sensory impression sight. Lacking this sense creates great challenges. Sensory loss in general causes major challenges in everyday life. Both in the nursery, at school, in working life, in daily tasks, in personal care. The list is inexhaustible, and the goal is of course the highest degree of independence. In order to achieve independence, there are many agencies that work specifically for the child. It can be about everything from training, to expert assessment, to applications for aids. We have a coordinator who basically has to coordinate all these things. Nevertheless, it is me, as a mother, who tirelessly coordinates all the different services around the child. In the child's individual plan, government actors who also work closely with the child are not even welcome. It presents challenges when you have a well-functioning IP that is used all the time. Information arrives too late, information never arrives - and the information can never be seen in context and in an overall picture together with all other information in the IP. As a mother, I would say that the task of coordinating is leaden - but must be done nonetheless. Because if not me, then who?

Case 6: Children without verbal speech who cannot use sign language. ASK – Alternative and supplementary communication

Mari has a condition that means she can neither speak verbally nor use her hands for sign language. This means that Mari always ends up in the middle of nowhere, as the right to ASK does not appear in any legislation that gives the child real rights to either acquire a language, further develop the language, access to being able to learn English at school, or proper training in how to use ASK.

She needs an eye-controlled PC, where a language book of symbols is built (adapted to age, how accurate one is with the eyes, and any cognitive challenges) in order to be able to communicate with the outside world. Mari naturally wishes to be able to talk to her parents and siblings, to make herself understood by the doctor when she is in pain, to be able to talk to fellow pupils and to be able to complete her studies and get grades.
Mari is one of the lucky ones who got to build a language on her eye-controlled PC, but didn't get it until she was 5 years old, because refusal, ignorance and that all agencies passed the responsibility on to each other - no one took responsibility for Mari, on an equal footing with other children, being given the opportunity to communicate.
She therefore lacked 5 years of language development and had a huge job of both learning to know her language book, and starting in first grade with all the subjects you have to go through.

Finding ASK competence in special education teachers is an almost impossible task, as there are very few who have real competence in Norway. This means that those who will work with Mari and arrange school assignments must acquire ASK competence along the way. This takes time before it is in place, and Mari misses out on many important subjects and what the rest of the class learns. Example: Mari got the opportunity to be able to say "Jew" two weeks after the subject about Jews was over.
No one in the municipality can help Mari and leaves the responsibility on the school - which has never had students in need of ASK before. Nor has anyone in the municipality been interested in trying to speak to Mari themselves, even after she acquired her language. They never asked what help she needed. Mari has made it to the 6th grade and still does not have access to all the teaching in all subjects that her fellow students have, she is not allowed to take part in national tests and the school is not allowed to set aside enough time to do assignments. She only had her language book translated into English in the 6th grade so that she had a chance to learn English.
The municipality has never been involved in Mari's language, and she has had to be excluded from education and social life for many years. If only Mari had a coordinator who had plenty of time to listen to her (it takes far longer to talk with the eyes than with the mouth/hands) and coordinate between agencies so that the development of the language, training in it etc. came into place , then Mari would have had a completely different starting point in her language.

Udir has produced a lot of information material about special pedagogy. Special education includes challenges with sense, communication and learning. PPT's expert assessment and individual decisions on special education are an important part of everyday school life for many children/young people with a variety of functions. A children's co-ordinator who will sit on a lot of information from many collaboration partners, can be an important resource in the work of linking different services together with expertise in co-creation and interaction around the child.

See also:

https://ungdomogsorg.no/

https://www.udir.no/laring-og-trivsel/spesialpedagogikk/

https://www.helsedirektoratet.no/veiledere/parorendeveileder

https://www.helsedirektoratet.no/retningslinjer/palliasjon-til-barn-og-unge

https://www.statsforvalteren.no/nb/portal/Nyheter/2022/04/melding-til-barnevernet-ved-hoyt-skolefravar/

https://www.helsedirektoratet.no/veiledere/gode-helse-og-omsorgstjenester-til-personer-med-utviklingshemming

https://www.helsedirektoratet.no/veiledere/barn-og-unge-med-habiliteringsbehov/Barn%20og%20unge%20med%20habiliteringsbehov%20%E2%80%93%20Veileder.pdf/_/attachment/inline/ab46edad-6c58-4c23-9115-9d77893d9cad:051362bf85ad243bdab308e68c52d3d4e1633e67/Barn%20og%20unge%20med%20habiliteringsbehov%20%E2%80%93%20Veileder.pdf

2. Cooperation at system level

2.1 The welfare services must cooperate beyond the follow-up of the individual child, young person and their family

The purpose of the duty to cooperate is stated at the outset in section 2.1, and it is positive that it is referred to "national professional guideline for early detection of vulnerable children and young people".

Løvemammaene believes that the municipality's duty and responsibility must be clarified in the section dealing with Section 3-1 of the Child Protection Act. This is done easily by setting the context with the upbringing reform (child welfare reform) which came into force on 01.01.22. The aim of the reform is, among other things, to help strengthen the municipality's work with prevention and early intervention, where the help will be better adapted to the needs of children and families.

Suggestions for supplementary text:
"It follows from Section 3-1 of the Child Protection Act that the municipality has responsibility for promoting good upbringing conditions to prevent children and young people being exposed to neglect or developing behavioral problems". Section 3-1 of the Child Protection Act must ensure the municipality's overall responsibility when it comes to the preventive service offered to children and families. The municipal board itself must adopt a plan for the preventive work.

"It is important that the municipality sees the duty to cooperate at system level together with the municipality's duty under Section 3-1 of the Child Protection Act to coordinate the preventive service offered to children and young people. The municipality's plan for the preventive work shall, among other things, describe how the agencies can cooperate, and will be part of the municipality's system for cooperation at system level".

2.2 Responsibility for the duty to cooperate at system level

Løvemammaene believes that the overview of which actors are responsible for fulfilling the duty of cooperation in the various welfare services is clear and concrete. There must nevertheless be a brief overview under this point of the procedure, and to whom, if you feel that an actor is not fulfilling his duty to cooperate.

As regards the requirement for internal control, which is described in a separate section, reference is made to several guides and laws where this is laid down. The Løvemammaen believe that the following supervisors must be included under this point:

KS's guide for internal control in 2020: "Order in one's own house - The municipal director's internal control".

Bufdir of 2022: Internal control for the municipality's child protection service - a guide.

2.3 Children and young people must be involved in work with cooperation at system level

It is positive that the involvement and participation of children and young people is also emphasized at system level and that several concrete examples are given that can be used in practice. The lion mothers will add the use of experience consultants as an example of participation, where one has the opportunity to ensure close participation and involvement, with people who have their own experience.

The Løvemammaen believe that there must also be a separate section under chapter 2 that deals with this “cooperation for the best interests of the child". The purpose of cooperation at system level is for the welfare services to ensure that children and young people who need it get the right help at the right time, by the services working together to strengthen the children's overall upbringing and learning environment. Assessment of the child's best interests must also be made clear at system level, and in this way the supervisor will contribute to the services moving in the same direction, with the child's best interests as the target image.

Current supervisors who explain cooperation in the best interest of the child between daycare and child protection and between child protection and mental health services:

https://www.regjeringen.no/globalassets/upload/bld/til-barnets-beste—samarbeid-mellom-barnehagen-og-barneverntjenesten.pdf

https://www.helsedirektoratet.no/rundskriv/samarbeid-mellom-barneverntjenester-og-psykiske-helsetjenester-til-barnets-beste

2.4 Organization of cross-sectoral cooperation

Finally, in the supervisor's chapter 2.4, examples of different collaboration structures are given. This is initially positive, but it requires that the Norwegian Directorate of Health undertake preliminary work to verify the examples presented. When structures are exemplified through a national guide, one must expect that these are models that have documented effect, duration or are widespread across a certain proportion of municipalities. The lion mothers react to the fact that the Norwegian Directorate of Health has chosen to refer to the "Hole model". The guide states the following:

«The hole model is a model for systematic cooperation for children and young people and is founded on "co-creation" between residents and employees in the various services (midwifery service, health center and school health service, physiotherapy service, municipal psychologist, educational psychology service, child protection service, NAV, initiatives for the disabled, schools and kindergartens)."

The Hole model is not in use, not even in Hole municipality, and is very little suitable as a precedent for good cooperation structures. The lion mothers ask that the example and the link be removed, as it will mislead more than it guides.

Examples of guidelines and guides for cooperation between sectors:

https://www.helsedirektoratet.no/veiledere/parorendeveileder

https://www.helsedirektoratet.no/retningslinjer/palliasjon-til-barn-og-unge

https://www.helsedirektoratet.no/veiledere/gode-helse-og-omsorgstjenester-til-personer-med-utviklingshemming

3. Cooperation on an individual level

3.1 The welfare service must cooperate when necessary

"The requirement of necessity should not be interpreted strictly. It is the overall needs of the individual child, the young person and the family that are decisive for whether the welfare services have a duty to cooperate.

It may be necessary to cooperate even if the need for help is short-lived. It is therefore not a requirement that the need be permanent or extend over a certain number of months or years".

Without any examples, it invites a great degree of discretion and a great degree of municipal differential treatment when it comes to what is "not interpreted strictly". In order for parents to be able to orient themselves in the guide, there must be clear examples of what is to be included.

Examples of situations where cooperation may be necessary:

"Some children and young people have extensive and regular needs for health and care services in everyday school life. Examples of such needs could be medication, tube feeding, handling of medical equipment etc. Some pupils may, for example, have asthmatic or epileptic attacks while at school. Cooperation between the school and the health and care services is then necessary so that the student's needs are taken care of in everyday school life".

Diagnoses and conditions that are exemplified here as health care in schools are very limited. In many cases, which are the most difficult to reach in the municipalities, the child has very complex needs for health care in their ordinary everyday life, such as access to oxygen, intravenous nutrition, continuous breathing support, 1:1 supervision for seizures, unregulated diabetes, etc. It is said nor anything about cooperation which is necessary to create sustainable emergency plans/emergency plans around the individual family or child, so that emergency and backup solutions can be quickly implemented if necessary, while the family then has insight into, consented to and has a say in advance over the emergency measures that are implemented.

Reference should also be made to examples of precedent where it has been possible to achieve a common zone between school and health, such as with access to BPA in everyday school life. It is also pointed out that examples from day-to-day kindergarten are not even mentioned in the guide in this context.

"In some cases, the family receives services from several service providers. Some of the services are for the children, while others are for the parents. It could be that the child has psychological challenges, low benefit from the training and that there are major conflicts in the family. The child is granted special education, the school is working to arrange for an alternative school run and the child has had a class in BUP. Due to the high level of conflict at home, the family receives help from the child protection service in the form of parental guidance. Mother participates in a work-oriented course under the auspices of NAV. The mother is struggling to follow up on agreements with the school, the child protection service and BUP, in addition to being present at the course herself. She has been told by her supervisor at NAV that if she does not attend the agreed course, she will lose the initiative money and risk losing her place on the course. In such cases, it is necessary to coordinate services and follow-up for the parents so that the child or young person receives a good service offer from each of the service providers.'

The Løvemammaen point out that it is appropriate to have examples that show that families receive services from several service providers. On the other hand, there is a skewed distribution in that child protection is the service that is primarily singled out as a guiding body. In many cases, it is the specialist health service that has the best knowledge and expertise about a child, and yet the guidance does not problematise the fact that the municipality can disregard advice they receive from, for example, a senior doctor at the children's ward at a treating hospital. Child protection does not have expertise in seriously ill children. Therefore, they cannot provide guidance, as these children have complex medical conditions that require a completely different professional approach from child protection.

3.2 Plan and implement the collaboration

At the beginning of the chapter, the purpose of "cooperation for the good of children". It is good that the guide contains a section with what is best for the child in practice, and what may be aspects of such an assessment. However, such an assessment and focus must be more clearly presented and given more space to ensure that the child's best interests are considered as a fundamental consideration. As it is now, we have to look forward to finding the section "best interests of the child" which is hidden under the heading "plan and implement the collaboration". The best interests of the child must have a separate heading in the guide, both during collaboration at system level, which the Løvemammaene refers to under Chapter 2, as well as here in chapter 3 cooperation at the individual level.

In addition to the section that now stands below "best interests of the child", it must be stated that a child's best interests assessment must be individual, concrete and in writing. Making a child's best assessment means in practice that you must carry out:

A concrete and discretionary assessment of what is in the best interests of the child in the matter. The assessment is made up of several elements that must be weighed in each individual case. Here you must include all relevant aspects of the situation the child is in, what needs the child has and what is the best solution for the child.
After you have decided what is best for the specific child, the child's best interests must be weighed against other considerations. The child's best interests must be a fundamental consideration and therefore weigh heavily, but must be weighed against other factors in the case. The stronger the child's best interests advocate for a particular solution, the more it will take to set it aside.
Finally, the content of the child's best interests assessment must be shown and documented. Here you explain the weighting of the various considerations and refer to the justification, conclusion or decision.

When it comes to elements in an assessment that are in the best interests of the child, the Løvemammaene will add the following to the existing list:

The child's right to education.

The child's right to be heard

"The welfare services must ensure that the child, the young person and the parents can express their needs, wishes and views. Children and young people have the right to express themselves, but no obligation."

The supervisor gives advice for talking with children and young people, but there is no reference to this Article 13 of the Convention on the Rights of the Child which confirms that children can express their opinions in a variety of ways. The article sets clear guidelines for how diverse listening to the child's voice can be.

The child shall have the right to freedom of expression; this right shall include the freedom to seek, receive and communicate information and ideas of any kind without regard to borders, whether it occurs orally, in writing or in print, in artistic form or through any means of expression the child may choose.

"Children with disabilities may have an additional vulnerability when it comes to the right to be heard and participate. The services must ensure that it is not only the parents or guardians of children and young people with disabilities who receive information and are allowed to participate, and that the information is adapted to the children and young people's age, maturity and disability. The services must also assess whether there is a need for the help of an interpreter, ASK (alternative supplementary communication) or similar.

Lack of facilitation with ASK must be made clear as a breach of the Convention on the Rights of the Child and the child's right to be heard in the guidance.

"For example, a child may wish to limit the number of participants in the collaboration meetings so that it will be easier to participate actively and express their own views. It may then be relevant that only the most central welfare services participate in the meetings, even if it is necessary for several of the welfare services to participate in the collaboration in other ways. »

It appears unclear whether the right to limit the number of participants from this perspective is also a right that applies to the parents. The parents and the child themselves have a large say in determining who will receive information and how this information will be shared. The supervisor must say something about this, and how the children's coordinator can to some extent pass on relevant information about the topic/arena that exactly that actor needs to know. The child and parents may find it difficult that many people should sit around a table and discuss intimate details, e.g. around care, incontinence etc., about which only a small number of participants need information in order to be able to provide their services to the child. Today, many parents find that all information about their child is shared with everyone, regardless of whether they need this information or not. An example could be if a young person is to use birth control pills. A physio or occupational therapist or school will not need to know that to do their part of the work around the child.

The guide does not give any examples of how to get the above to e.g. by dividing meetings into two, where the child in question participates in parts of the meeting and with the collaboration partners that is natural. In some cases, a separate meeting for the child with the children's coordinator before and/or after the meeting can be a favorable solution.

Examples (of cooperation at the individual level)

It is pointed out again that both of the examples described largely involve the child protection service as the central service provider. There is a lack of description of case-handling offices such as the allocation office and similar services, specialist health services and rights bodies such as patient representatives, voluntary organisations, competence centers and others.

When the child turns 18, care allowance (conditions from NAV are serious illness and developmental disability, which very many people on care allowance will not pay on their 18th birthday), assistance benefit (graduated to rate 1) and care allowance (welfare leave with pay disappears) will be reduced or disappear over the night. Many of these young people live at home and are accompanied in a natural transition to adulthood. If the municipality does not compensate and cooperates well with the family to ensure that the transition is possible, then the young person is almost forced into housing with staff. These are often also young people who will continue through work with functional support, VTA or day care, which requires both planning and cooperation. There is also a missing case with a description of the transition to legal age in the guide.

Proposal for case: transition to the age of 18:

Brage has CP, but with the right help and follow-up he is able to master many things in life. He has just finished upper secondary school with arranged tasks and a school assistant who has helped with physical and personal hygiene, and in social settings, which has led to Brage having more friends in his class.
Because Brage has had good and stable schooling, both parents have been able to hold full-time jobs and have a connection to working life that has been important to them. Brage also has 6 hours a week with support contact. There is a 25-year-old boy who has become a good friend. He takes Brage to his corps every Tuesday, and every Thursday Brage has training with a physio in the municipality. Every other Saturday they do various activities such as cinema, museum, cooking for the family etc.

Brage is very social and is looking forward to starting a day care program offered by the municipality. There he gets a community, work and can earn money. But the municipality refuses BPA, and instead offers that Brage can be accommodated in a care home. The municipality believes that the care home has an equally good offer for Brage, because there are various activities during the day. Brage does not want to move yet, and the parents want Brage to continue to feel mastery through the daycare that provides a salary. A coordinator in the municipality disappeared on the day Brage turned 18. Brage is out of all systems in the municipality that have followed him as a child and youth, and now no one in the municipality knows him. A transition was never prepared, as the parents thought this would happen in the municipality automatically, and have not insisted on transition meetings. The good school offer and support contact arrangement have resulted in high trust in the municipality from the parents, and they are now at a loss.

Because Brage is otherwise healthy, the parents are not entitled to care money from NAV, nor do they receive care allowance from the municipality, as the municipality believes that they must accept the offer of the care home. The father has to take unpaid leave from work to be at home with Brage. After a couple of months, the father is exhausted from having to help his son with everything. Brage himself is also very understimulated by no longer being at school, or has to be at the day care facility to work, so he struggles with depressive difficulties and is on sick leave. The complaint about BPA takes a total of 1 year and 9 months when the State Administrator finally agrees with the family and encourages the municipality to make a decision about BPA, so that Brage can live as independent and free a life as possible.

4. Coordination obligation for the municipality

4.1 The municipality must clarify which welfare service will coordinate

"The obligation to coordinate establishes a responsibility for the municipality to ensure that the individual service recipient receives a coordinated service offer.

The coordination obligation applies when the services have duty to cooperate on an individual level. The coordination duty must ensure that a municipal service is given the main responsibility for the coordination of the services.

It is the municipality, not the individual municipal service, that has a duty to coordinate. In many cases, it is clear which welfare service is responsible for coordinating the service offering, for example when a service has the most to do with the child or young person."

The introduction appears complicated to understand for children, young people and their families, but also for municipal employees. In the same section, it is indicated that it is the "municipality" that has the duty of coordination, while at the same time it is referred to as the duty of the individual place of employment. It does not appear that the individual municipal employee or municipal manager of the place of service must manage and take care of this coordination duty in their exercise of the service offer.

4.2 The municipality itself chooses how it can take care of coordination responsibility

"There are no in-depth rules in law or regulations that set requirements for how the municipality must take care of coordination responsibility. According to the Municipal Act, it is the municipality itself that decides this. This gives the municipality room for local adaptations according to conditions and needs.

The municipal director has decision-making authority, and can delegate the authority to, for example, a coordinating unit or to a staff and support function in the field of education.

It is important that in each municipality it is clear who will decide on coordination if the welfare services themselves do not agree, so that children, young people and their parents know who to turn to if the coordination does not work".

The Løvemammaene emphasize that in the coordination chapter for the municipality, it does not appear anywhere what the municipalities, parents or other bodies must do if someone fails to coordinate, if coordination does not work, or if they do not come forward with their perspective. The fact that there are no detailed rules in law or regulations regarding the safeguarding of coordination responsibility will also reinforce the already very large municipal differences. In municipalities where this was difficult for parents in the first place, the guidance counselor will not bring about any relief in the burdensome coordination responsibility and complaint responsibility imposed on parents only to reach a decision within their rights. It also says very little about how families not must be exposed to the disagreement debate in the municipality, or how they have an impact on what is decided by the delegated decision-making authority.

The guide, as it exists today, does not give any answer to what parents can expect from the duty of coordination or services as a child coordinator, or how to complain if it does not work. It also does not appear in the guide by whom such complaints are to be processed, or how the case is processed. It is important that the supervisor also specifies this section to ensure legal security for parents and children.

Nor does it appear how the municipalities are to make it clear whether delegation authority is retained by the director of the municipality, or delegated to a coordinating unit. Neither is it clear who can be given delegation authority if the coordinating unit is not an operative body in a municipality.

It is important that the supervisor encourages the municipality to establish permanent contact persons within the various departments in the municipality that the parents, the child and the coordinator can relate to.

Concern regarding a lack of proper help in follow-up in light of the duty to coordinate and other provisions on coordination and coordination:

The Løvemammaen have emphasized on several occasions that there are several municipalities that do not comply with the obligations they have in the legislation, to relieve the parents and prevent irresponsible services and overloading. Municipal decisions are often marked by their wording responsible services, without specifying what the municipality means by the soundness requirement. There can be a large gap between what the specialist health service recommends and believes is proper health care in the home, and the actual decisions made by the municipalities. The administrative offices for health and care services have been given a responsibility that interferes far into the lives of individuals.

We are particularly concerned about families with an immigrant background, where language barriers and cultural understanding result in these families receiving very little or no help despite children with serious and major needs for help. The families we meet in our work, and the meeting these families have had with the aid system until they come to us, can only be described as discriminatory. The guide must point out a special responsibility to capture, look after and follow these families closely. The lion mothers believe that a separate section about this group must be included in the guide, which includes:

language barriers
the interpreting service
cultural differences, taboo
System and service location understanding
case with which deals with the minority perspective
municipalities/districts with a high proportion of families with an immigrant background
relevant partners/organisations (e.g. Abloom, LDO)

Suggested case: Families with an immigrant background:

Halima has a multifunction variant due to a rare and serious gene defect. She is 15 years old and needs help with everything from grooming, dressing and feeding. She has to be supervised 24/7 as she constantly puts herself in danger, is awake for several hours every night and puts all kinds of objects and things in her mouth. She is a gentle girl who loves it when her siblings joke with her or make her hair nice.
Halima's father has had to work 150-200% a month for 10 years so that his family of five can afford to live. Halima has two older sisters, one aged 17 and one aged 19. Halima's mother does not speak Norwegian well, because she has never had the opportunity to either study Norwegian or work in Norway after they arrived in the country 10 years ago. Mother has had to spend all her time at home to take care of Halima.

It was just over 2 years before Halima's mother came into contact with the municipality (including the coordinating unit or the allocation office), despite the fact that the children's rehabilitation sent epicrises to both the municipality and the health centre.

For 2 years, the specialist health service believed that Halima was being looked after by the municipality because the mother's communication difficulties when she tried to convey that it was only the health nurse at the school with whom she had any contact. When the misunderstanding is discovered, a social worker at the habilitation becomes involved, and helps the mother find contact details and an application form for public services.

Halima has then been placed in a special school without any further information about municipal services. It works well at the special school and Halima thrives, so even though mother receives information that there are several choices around school, she wants Halima to continue at the school she attended for two years. Mother then applies for both BPA after school, and one weekend a month with a private relief worker (mother's friend). Halima gets rejected! Instead, children's accommodation is offered 24/7, or 2 hours a week with support contact. The mother agrees to support contact as she wants her youngest daughter to stay at home.

Only now that Halima has turned 15, without any increase in support contact, or any offer of care pay for the enormous amount of work mother does, has mother come into contact with a voluntary organisation. There she is helped to apply for BPA, and privately relieves herself again. An application is also made for carer's allowance for the hours that may not be covered by BPA and relief. The municipality is also reported to the State Administrator for irresponsible services and disclaimer of responsibility for the 10 long years the family has been without help. Halima then finally gets a co-ordinator who quickly gets on the scene and begins to map out the needs of Halima and the rest of the family and can easily support the applications for public services.

The sisters have had to help babysit when mother has had to do the weekly shopping, and they have had to act as interpreters in a majority of cases when the interpreting service has never been connected. For 10 years, the mother has been excluded from working life and being able to learn Norwegian, and all three children have lost their childhood as a result of far too great a strain on the family.

See also:

https://abloom.no/

https://www.ldo.no/

https://www.pasientogbrukerombudet.no/

https://lovemammaene.no/hjelpetjenesten/

Concern regarding families with a lack of legal certainty.

Legal certainty is about the individual being protected against abuse or arbitrariness on the part of the authorities, and about proper case management and requirements for the content of the decisions. The legal certainty as the appeals system is set up and with the State Administrator's lack of authority, does not reflect the exercise of power to which several families with burdensome care work are exposed. The families are at the mercy of help from the public in order to have a livable life. When the municipality does not take care of its duties and fails grossly, the State Administrator lacks real authority to step down.

We recommend that you read the entire notification letter that was previously sent:

https://lovemammaene.no/alvorlig-varsel-om-manglende-rettssikkerhet/

The Løvemammaen point out that the supervisor lacks guidance on proceedings, responsibility and the right to appeal in the case of inappropriate services, and in the case of a lack of legal certainty for affected families. We see this as a very serious shortcoming when one of the supervisor's target groups is parents.

Of the agencies that should be listed in the guide as possible help agencies to turn to regarding rights are:

The Equality and Discrimination Ombudsman (LDO)

https://www.ldo.no/ombudet-og-samfunnet/ombudets-arbeid/veiledningstjenesten/

Joint organization for the disabled (FFO)

https://ffo.no/rettighetssenteret/

The lion mothers' help service:

https://lovemammaene.no/hjelpetjenesten/

The patient and user representative:

https://www.pasientogbrukerombudet.no/

5. Children's coordinator

Right to child coordinator - conditions:

"An overall assessment must be made of whether the condition of the child or young person is serious. The assessment theme is what the condition can lead to in terms of impaired functioning and coping skills, invalidity, disease development, pain or reduced life expression. Whether the condition will lead to the loss of important bodily functions or senses is among the central topics. Available knowledge about the relevant condition should be included in the overall assessment.

Physical obstacles in the development of life can lead to consequences both psychologically and socially. Mental illness can also lead to social isolation and a reduction in physical activity. Combinations of illness, injury or impaired functioning can lead to the condition being considered more serious overall.

In the assessment, consideration can also be given to how complicated the condition is to treat or what health and social work expertise is required to treat the condition or its consequences".

It is pointed out that many children live with very complicated conditions, where health and social work competence alone cannot be the yardstick for degree of seriousness or complexity. Seriously ill children live with BPA with and without health care, with and without skilled workers, in arrangements that work very well precisely because the assistants are given good training on this particular child. With secure relationships between child and assistant, and close cooperation with parents as supervisors, the child can be looked after both within what is medically sound and child-centred/family-friendly. There is a lack of access to examples that enable municipalities to look at the room for action instead of limitations in follow-up and the provision of good services.

"Moments such as family situation, socio-economic conditions or linguistic and cultural background ~~may be~~ is important in an overall assessment of the child's need for complex or coordinated services. The child's needs ~~can~~ shall is also assessed in the context of the family's overall duty of care and care duties. Where there is doubt as to whether the condition is met, but the family's situation is very difficult, ~~can it be right to~~ the municipality must emphasize the family's overall situation in the assessment. The child can also fulfill the condition regardless of the family's situation".

There are very large municipal differences related to the extent to which overall assessments are done adequately. There must be examples of such overall assessments, and where parents can turn if the overall assessment is not felt to be good enough. In this guide, the Directorate of Health must also change the wording to a greater extent from can and should, to shall and must.

5.2 The municipality must offer a children's coordinator

"The obligation to offer a children's coordinator has been added to the municipality Health and Care Services Act § 7-2 a.

The coordinating unit in the municipality has overall responsibility for appointing, training and supervising children's coordinators.

Through the appointment of a children's coordinator, who is responsible is designated the coordination of services for the child.”

It does not appear what consequences this will have for municipalities that do not offer a child coordinator, and not where parents can turn if the municipality still does not offer a child coordinator for someone. It does not appear what obligation the municipality has to document a lack of service, or to assist parents who do not have their right fulfilled, in a complaint to the State Administrator.

"When the municipality is aware of needs that may give the right to a children's coordinator, the municipality must, on its own initiative, guide the family about the right, and take the initiative for a rights assessment where the family wants it.

The municipality must make the decision about the children's coordinator in writing, together with a justification and information about the right to appeal. The decision must be documented in a suitable case management system.'

There is no information about what consequences this will have for municipalities that do not provide guidance or take the initiative to do so, or that do not give a written decision about a children's coordinator or access to appeal.

The Løvemammaene's experience, from families around the country, indicates that there is a long way to go before child coordinator becomes a functional and accessible role in practice.

In order to give families with chronically ill children or children with functional variation real help and relief in dealing with the "system" through interaction and coordination of services, the following must happen:

Full coordinator positions with regular training/education.
In small municipalities, inter-municipal cooperation can be considered
Digital tools with access to a calendar that interacts across agencies.
The coordinator must be given enough authority to be able to ensure good services for families.
Several full coordinator positions for children and young people in the specialist health service

These are absolutely essential points to ensure that real interaction and coordination actually moves from paper to reality.

5.3 Child coordinator's duties

"The children's coordinator's duties follow Health and Care Services Act § 7-2 a second paragraph letters a–e.

The children's coordinator must ensure "

The lion mothers react to the fact that there have only been 5 points for what the child coordinator's duties should be. Here, significantly more points must be included if the child coordinator role is to function as intended. We have therefore added absolutely necessary points from fq.

a. coordination of the overall service offer,

b. to have an overview of and contribute actively to safeguarding the municipality's responsibilities as necessary
follow-up and facilitation for the family and the child in the form of an offer or performance of health and care services and other welfare services,

c. that the family and the child receive the necessary information and comprehensive guidance about the health and care services offered,

d. that the family and the child receive the necessary information and comprehensive guidance about other welfare services and relevant patient and user organisations, that the family and the child are given guidance in their contact with these, and that contact or referral is made to such services or organisations, and

e. progress in the work on the individual plan,

f. to create a responsibility group and call for responsibility group meetings and ensure that the responsibility group consists of the right people, lead the responsibility group, provide training to participants in IP and coordinate IP, as well as follow up on what is agreed upon at responsibility group meetings,

g. clarify consent/power of attorney with parents,

h. make contact with various aid agencies on behalf of the family,

i. coordinate the child's appointments by keeping in touch with the agencies that are around the child, ensure that, as far as possible, several appointments are brought together on the same day (if it is possible for the child of course) and encourage inadequate follow-up,

j. map the child's and the family's needs - see the whole family situation,

k. have regular contact with the family to find out if there is anything they need help with and investigate what rights they have and work so closely with the family that she/he knows the child and the family's needs, and follow them over time,

l. ensure that the child and the family have enough relief, aids and necessary services around them, which give them freedom and quality of life,

m. writing applications, complaints and obtaining documentation when necessary,

n. order equipment from the treatment aid center and pharmacy (where assistance is needed and possible, e.g. with fixed, standardized orders and families with language barriers),

o. have their loyalty with the child and the family

p. receive good training (courses, relevant education, etc.)

q. must have competence in legislation, services and systems, and in addition competence in what it is like to live with children with serious illness and complex challenges, knowledge of a different family life, families with an immigrant background, crisis management, bereavement, siblings as relatives, child palliation, ASK etc.

5.4 The municipality must ensure that the children's coordinator has sufficient competence and framework to be able to take care of his responsibilities

Competence in the child coordinator role

“Children's coordinator ~~should~~ must have good knowledge of health and care services and other welfare services. It is both about getting training before you step into the role, and guidance and follow-up in the further learning process.

The role of child coordinator can be fulfilled regardless of subject and professional competence, ~~and it should~~ but it has to emphasis is placed on the individual's real competence and prerequisites to be able to take care of the children's co-ordinator's statutory duties. A factor that is more prominent for children's coordinators than other coordinator functions is that they must look after both the child and the family. A combination of relevant subject and professional competence, experience and personal suitability is a key starting point. Being able to handle complexity, having the ability to work in a structured way and having good skills in building relationships are important qualities in the assessment of suitability. "

We refer again to wording that must be changed in the guide:

The municipality must ensure children's coordinator courses and/or training that includes interaction at individual and system level, legislation, CRPD and human rights, ethics, child and youth competence, as well as family and relatives perspective, normal siblings in unusual families, child palliation, bereavement, living in preparedness, crisis management, ethnic minorities/families with an immigrant background and the like. Without ensuring the above matters, the children's coordinator will never be able to help these families.

It is also unanswered how and where child coordinators should be able to acquire expertise in child palliation, as recommended in the national guideline on child palliation and as the Minister of Health points out that the child coordinator is expected to do.

The municipality must ensure a good framework for the work

"It is a manager's responsibility to ensure that the children's coordinator has a framework to fulfill his responsibilities. Key prerequisites for security in the role are that the children's coordinator has managerial support and that the role is valued and legitimized in the day-to-day work in the business. For example, it is important that managers recognize that the children's coordinator spends time developing good relationships and competence in the role."

The country's kinship parents do not need leaders who value and legitimize a role, if that role does not have the time or expertise needed to relieve and relieve the parents of the enormous coordination work they do as of today, and in addition ensure cooperation and coordination with the surrounding agencies. You can anchor and applaud as much as you want, but it hasn't worked in the last 20 years, so we would advise thinking and prioritizing differently.

Lack of visibility of siblings as relatives in the supervisor

A nationwide survey shows that only 14 % of the country's municipalities carry out systematic mapping of children, including siblings, as relatives. This is a task Løvemammaene believes can be added to the child coordinator role in collaboration with the health center service/school health service. It is important to capture siblings who live in families with children who have an illness or functional variation, and the municipality must take responsibility for this work being assigned roles in the municipality that are naturally in dialogue with these children/families.

Number of children/families per child coordinator

"A children's coordinator should not be responsible for too many children and families. The number may vary depending on the assistance needs of the individual families and children. If the family has several children who need a child coordinator, it may be appropriate for the child coordinators to form a team."

Families spend an average of 19 hours per week on coordination work around their children with illness/functional variation. This must be taken as a starting point when the municipality hires a children's coordinator. In a municipality with dozens of families with extensive needs, these 19 hours per week will quickly add up to many full child coordinator positions.

It is difficult to set a concrete number, as the families who need a child coordinator will have very different needs. A single parent with an immigrant background who has children with profound developmental disabilities and autism will in all likelihood require more time and help than ethnic Norwegian parents who have children with the same challenges. This is always an assessment and balance that children's coordinators must have enough knowledge to make. But it might be an idea to look at what guidelines other aid agencies have to deal with, for example the child protection agency, according to the national guiding staffing standard, has a maximum number of 15 cases per case manager. FACT-ung team's staffing norm with the number of active cases per case manager can be another close yardstick.

In municipalities with a high proportion of families with an immigrant background, the municipality must consider the need to employ its own "minority coordinators" with special expertise in these families, including language barriers, interpreting services, cultural differences, taboos, and significantly more time-consuming needs for assistance in meeting with the assistance apparatus.

6. Individual plan

The challenges with the legislative changes are that they come before the necessary systems and tools are in place. Creating a guide for a society with already large municipal differences, based on a new piece of legislation that paved the way for yet another large national differential treatment, is a difficult task.

To meet the needs of our member families, IP in an ideal world would involve:

Digital IP platform (with bankID login)
Simple chat/message function in the IP
Shared calendar function
Own IP app (with bankID login)
Notification function and reminder function for (new) activity
Integration with other systems (e.g. health Norway, Tamigo)
Possibilities for step-by-step access in IP (privacy considerations)
Clear document archive
All required participants participate in IP and actively use the plan

We know there is a long way to go before many of the above points come true, so our focus here will further be what is possible to achieve with today's frameworks and tools. The Løvemammaene do not start with IP in paper form, as this is in no way a plan format that can be justified for use in 2022. The Løvemammaene believe that the supervisor must explicitly guide municipalities to adopt digital IP.

Children and young people in need of long-term and coordinated services have the right to have an individual plan drawn up

Children who need long-term and coordinated services must be offered a coordinator and an individual plan, and an individual plan will be the patient's palliative plan during the palliative process, according to the Minister of Health. We would like to clarify that children in palliative care also need emergency plans, emergency plans and medication plans, which must be included in the IP and used actively.

It is a big, and so far unsolved, challenge that the tool that the individual plan (IP) is in the first place is not fully digitized throughout the country. IP has great potential, but does not work as intended for several reasons. Mainly that there are still municipalities that have IP in paper form and incorrect use of digital IP as a result of a lack of training and competence, and a lack of participants in the plans.

The fact that municipalities use IP in paper form is challenging because it prevents interdisciplinary interaction in real time, and by the time the documents have been reviewed and input by the participants after responsibility group meetings, the person the plan applies to has often received a new diagnosis, started two new medications and changed the treatment plan. There is also a lack of security when documents with extensive and sensitive information must be sent round to several agencies via post and stored in several places. The municipalities must therefore invest in digital solutions for IP, and this must appear in the guide.

Although digital IP is a good tool for interdisciplinary interaction, there are major challenges related to use and utility.

The advantages are that digital IP is a secure platform for dialogue and interaction in the present, as well as the storage of meeting minutes, reports, plans and other relevant documents. Several software, e.g. DIPS Samspill, also has a digital calendar function. Unfortunately, HelseNorge does not interact with Dips Samspill in the sense that it would have been useful if the child's appointments in the specialist health service were automatically added to the calendar in the IP.

A known disadvantage is that it has rarely been possible to get all the necessary participants into the digital plans, this particularly applies to participants from specialist health services and NAV. Without the necessary participants in the individual plan, it is also not possible to use it as intended.

There are also major difficulties regarding the practical use of the plan. This is primarily due to a lack of training and guidance in the programme, and a lack of guidance on how IP can be used in an active and useful way. As a service provider, it is virtually impossible to provide training in something that you have not been trained in and do not have expertise in, and as a participant in the plan you often only receive login information and a quick overview of certain functions. A lack of structure, distribution of responsibilities and plans for work with IP is also a major pitfall. It does not result in good use of IP, because both the child's parents and the surrounding support equipment must use IP actively if it is to function. In addition, a lack of resources (time) is a major obstacle to continuity in the planning work.

Good guidance to service providers for training, structure and targeted work with an individual plan, as well as how one as a service provider and participant can and should use an individual plan, this supervisor must make sure to provide.

Thorough training must be provided in collaboration with the program provider. At least (depending on the size of the municipality) one person should be trained sufficiently to become a so-called "super user" with further training responsibilities in the municipality's digital IP programme.

Examples of structure can be routines for fixed weekly and/or monthly updates in the plan, including both the status of the child's achievement of partial goals in the plan, revision of the medicine plan and emergency plan if necessary, as well as standardized updates from the nursery/school, speech therapist, assistant, physiotherapist, parents (possibly child coordinator on behalf of parents) etc

An example of interdisciplinary collaboration using digital IP is that active and regular use by both the child coordinator in the municipality and the coordinator in the specialist health service can enable coordination of the child's appointments and follow-up, coordination of responsibility group meetings and documentation for applications, without parents having to take on this burden , as it is today. It is essential for the flow of the plan that the agencies involved work cross-functionally here as well.

Individual plan participants must consist of at least one from each agency/service involved in the person concerned, e.g.:

From the municipality:
- Children's coordinator
– Kindergarten/school
– PPT
– The health and care service, e.g. physio/ergo/relief
– BPA if desired/needed
- GP if necessary
- Case manager/allocation office if desired/needed

From the specialist health service:
- treating doctor/contact doctor/contact nurse
- representative from the children's palliative care team
– hospital coordinator
- Attention! When following up in several departments, e.g. both outpatient, habilitation and BUP, there must be representatives from both somatics and psychiatry, or at least one representative who knows the person and the family very well

From the state (if significant role in the child's follow-up):
– Statped
– NKSD, e.g. Frambu

Ev. from NAV:
- contact person in NAV
– aid center

The new statutory duty to coordinate and cooperate can only be interpreted to the extent that these bodies can now be ordered to participate in the child's IP.

7. Duty of guidance, duty of care and duty of confidentiality

7.1 Guidance obligation

Chapter 7.1 is used exclusively to summarize the various sectoral laws where the guidance obligation is specified. The Løvemammaen believe that it may be appropriate to have such an overview, and that it may help the target group for the supervisor. But a list of various pieces of legislation is not guidance, either for professionals or families. Løvemammaene suggests that the guide provides supplementary information, taken from the Circular to the Administrative Law, to provide more actual guidance for the text of the law.

Suggestions for supplementary text:

"All the welfare services that are target groups in this guide have a general obligation to provide guidance within their area of expertise. This follows from Section 11 of the Public Administration Act first paragraph". The provision covers both giving answers to questions, but also giving information on one's own initiative. Guidance can be given both orally and in writing, and even if it is the administrative body that initially decides whether guidance is to be given orally or in writing, the needs of the parties must be taken into account.

"The purpose of the guidance shall be to give children, young people and families access to look after their needs in certain matters in the best possible way".

"The extent of the guidance obligation must be adapted to the individual administrative body's situation and capacity".This means that a balance must be made of the nature of the case, the need for guidance and the time that is/should be available. The prioritization must not extend to persons or groups of persons who have a special need for guidance, and the guidance must be adapted to the individual's needs.

"Administrative bodies must, on their own initiative, assess the parties' need for guidance, cf. section 11 second paragraph of the Administrative Procedure Act". This assessment must be made on the basis of the nature of the case and the knowledge the administrative body has of the party and the party's possibilities to look after its own interests. In this assessment of needs, it is relevant to include how resourceful the party concerned is.

When the party asks for guidance, or when the nature of the case or the parties' circumstances give rise to it, there are, however, minimum requirements for the guidance the administrative body provides. The minimum requirement on which guidance must be provided is "rules for the proceedings, in particular on the parties' rights and obligations under the Public Administration Act" (Circular to the Public Administration Act).

"If someone applies to the wrong administrative body, the administrative body that receives the inquiry must, if possible, refer the person concerned to the right body, cf. section 11 fourth paragraph of the Administration Act..."

Digital guidance

Løvemammaene wants to use the opportunity in this input to show Steinkjer municipality's exemplary example of intuitive, easy-to-understand and easily accessible guidance on the municipality's public websites.

This guide should be included in the guide as an example of good municipal and publicly available guidance practice:

https://www.steinkjer.kommune.no/tjenester/helse-omsorg-og-sosiale-tjenester/barn-og-ungdom/veiviser-barn-og-unge-med-funksjonsnedsettelse-2/

Universal design of ICT

Løvemammaene believes that it must be indicated in the guide that ICT solutions must be universally designed, where this is required by regulation and applies to both private and public enterprises.

Universal design is based on the idea that services should be available to everyone, regardless of age, functional variation and level of education. People should be able to use websites that they encounter in everyday life in a simple way. The intention is that space should be given for diversity in that the individual can develop himself, decide for himself and participate in society on equal terms, i.e. equal participation.

https://www.uutilsynet.no/

7.2 Duty of care

In the same way as chapter 7.1, chapter 7.2 also consists exclusively of a summary of various laws and regulations. As mentioned above, this can be useful in itself, but does not provide any guidance, beyond knowledge of the various administrative bodies and the service provider's legislation. Here, too, the Løvemammaene are calling for content that provides guidance. The content of what is actually meant by duty of care is difficult to understand, both above the need for measures from the child protection service, and after the health and care service. The chapter must be able to be explained in an understandable way, particularly out of consideration for part of the target group that deals with children, young people and families.

Obligation to be aware of the need for measures from child protection

In the last paragraph, what is meant by the obligation to provide information and the obligation to report to child welfare services should be specified. This can be easily done as follows:

Suggestions for supplementary text:

Duty to provide information and duty to report

The term duty to provide information includes both a duty to report to the municipal child protection service on one's own initiative (read: duty to report), as well as a duty to provide information following an order from the child protection service and other child protection authorities. The duty to provide information follows from the same laws that are referred to at the beginning in the chapter on duty of care.

This means that the staff must, regardless of the duty of confidentiality, of their own initiative provide information to the child welfare service when there is reason to believe that children are being mistreated at home, are exposed to serious neglect or when a child has persistent serious behavioral difficulties. Serious behavioral difficulties mean serious or repeated crime, drug abuse or other forms of distinctly abnormal behaviour.

The requirement of reason to believe means that there must be a justified concern that the child is in a situation as described above.

"If the conditions for the obligation to report are present, the same services have an obligation to report to the child protection service. See also: Reporting obligation (bufdir.no).”

7.3 Confidentiality, consent and anonymous discussions

The Løvemammaen believe that the first paragraphs here are concrete and understandable information.

Access to provide confidential information to other administrative bodies

The point here is a prime example of a text whose content is almost impossible to understand without an in-depth knowledge of law and legislation. Terms such as "good language" are absent, and there is a lack of examples in the form of cases that actually explain what the provision contains in an understandable way.

The examples referred to are explained in one or two sentences, and are not concrete or comprehensible as to what may be actual conditions. We ourselves have difficulty understanding what the supervisor is trying to explain here. Here, the Norwegian Directorate of Health must give concrete and comprehensible examples of the three possibilities for sharing information with other administrative bodies.

In addition, Løvemammaene believes that when you refer to the duty of supervision, duty of attention, duty to report and duty of confidentiality, you must also inform about the duty to prevent in the supervisor. Although this is a duty that does not necessarily move across services, the duty clarifies the individual's responsibility, if one becomes aware of circumstances covered by the duty.

Proposal for duty of care in the supervisor

If you learn that someone may be subjected to violence or abuse, you have a statutory duty to prevent that from happening. All forms of violence are unacceptable, and the duty to prevent involves a duty to prevent violence that is a great danger to life and health. The duty is described in Section 196 of the Criminal Code, and is triggered when you become aware that the act will take place, or that you believe that the act will most likely take place.

The duty of prevention applies to all of us, and is an individual and personal responsibility. The duty of confidentiality applies both to those who are professionals and are covered by various laws on confidentiality, and to you who are private individuals.

The duty to prevent comes before the duty of confidentiality, and when you have a duty to prevent, it means that you have a duty to notify, even if your colleagues or your manager do not share your perception that a serious offense will occur.

Many workplaces have their own routines for how to proceed when reporting to the child protection service or notifying the police. If you are in doubt, or you are a private individual, you can contact the child welfare service or the police on 02800. Explain the situation and ask for help in assessing how to proceed. Depending on which form of confidentiality you are subject to, in such cases it may be necessary to anonymize the case in the first instance. If you call as a private person, you can choose to be anonymous yourself, and do not need to give your own name or someone else's name in the first instance.

Overview of violent and sexual offenses you have a duty to seek and prevent (from plikt.no):

forced marriage, § 253 of the Criminal Code
serious deprivation of liberty, § 255 of the Criminal Code
association on serious deprivation of liberty § 256
aggravated human trafficking, §258 of the Criminal Code
grievous bodily harm, § 274 of the Criminal Code
marriage with someone under the age of 15, § 262 second paragraph of the Criminal Code
murder, § 275 of the Criminal Code
association of murder or causing significant harm to body and health, §279 of the Criminal Code
abuse in close relationships, § 282 of the Criminal Code
gross abuse in close relationships, § 283 of the Criminal Code
genital mutilation, Section 284 of the Criminal Code
waiting in a helpless state, § 288 of the Criminal Code
rape, § 291 of the Criminal Code
abuse of superior power and the like, § 295 of the Criminal Code
rape of children under 14, § 299 of the Criminal Code
gross sexual intercourse etc. with children between the ages of 14 and 16, Section 303 of the Criminal Code
incest, when the victim is under 16, § 312
sexual intercourse between other close relatives when the victim is under 16, Criminal Code 213
For other offenses you have a duty to prevent, see Section 196 of the Criminal Code

See also:

https://plikt.no/

https://www.facebook.com/visuallab.no/videos/5-sp%C3%B8rsm%C3%A5l-om-du-faktisk-har-avvergingsplikt/1418884294932529/

8. About the supervisor

Evaluation of the legislative changes

The lion mothers point out that it is only explained that it is to be investigated whether the changes in the law work according to their purpose. It does not appear how children, young people and their families themselves will be allowed to take part in the research which will evaluate whether families experience more holistic and coordinated services. It does not appear how families are to be recruited, which patient and user organizations are to be heard, or what diversity of complex challenges is to be included. It also does not occur whether only the municipalities themselves are to answer this, and whether it is to include statistics for complaints to the State Administrator, the Civil Ombudsman and other bodies.

With best regards
The lion mothers