THE LION MOTHERS' SUGGESTIONS ABOUT BPA
18,846 words.
Some of the most important words we can deliver from us this year.
Our children's right to an equal, safe and good life is at stake.
Are you curious about what the Løvemammaene think about the BPA committee's NOU, which is now being consulted? Then you should take the time to read our consultation input. It's 55 pages long, so maybe it's an idea to make yourself a cup of coffee or tea first!
The lion mothers' consultation input to NOU about BPA "Self-governed is well-governed"
Introductory comment
According to the NOU, "Self-governed is well-governed", those who have a need for health care of such a nature that they require health-related expertise or training in such tasks are not worthy of equality, freedom and opportunities for independent lives. The BPA committee refers to many of Løvemammaene's input in the report, but does not seem at all to have understood our message about the precarious need to include health care in the BPA scheme. It is also problematic that the committee does not see the connection between illness with subsequent need for health care and functional impairments. One does not exclude the other - on the contrary, they often go hand in hand. The lion mothers are not only shocked, but this also triggers a tremendous fear in parents who have children and young people with various needs for health care. Should we, who today have health care incorporated into the BPA scheme, actually lose the right to equality and quality of life? In practice, this is depriving our families of life itself.
We, who have long fought against municipalities to be able to use the equality tool that BPA is supposed to be (but to which we have not been entitled due to health care), have been looking forward to the day the NOU would come. There are many of us who have submitted input, had conversations and meetings with committee members, written articles and worked hard to highlight how important BPA with health care for children and young people is. We thought we had been understood, we trusted that members from both Safo and FFO would speak our case, and we were convinced that we are worth just as much - we with the chronically and seriously ill children. Instead, we are now being thrown under the bus.
In the BPA committee's proposal for new regulations, it is stated that: "Self-managed personal assistance does not include: Tasks related to one's own health which are of such a nature that they require health-related competence or training in such tasks so that the person themselves, or together with a co-worker manager, can take responsibility for having them carried out". In a joint dissent, committee members Sonja Jennie Tobiassen, Sverre Fuglerud, Vibeke Marøy Melstrøm and Tove Linnea Brandvik have written a separate bill which states: "BPA does not include: (...) tasks that the individual himself considers require health-related competence.". The latest proposal is slightly more generous, but it still excludes everyone who is actually dependent on people with health-related expertise. For many families with chronically and seriously ill children, both of these proposals are disastrous.
The lion mothers know enormous frustration that families who have chronically and seriously ill children will have to stand on the barricades and fight for what should be very basic rights. BPA with health care was admittedly not a right in the previous legislation, but now we really believed that we were being listened to. Unfortunately, it turns out that we have been speaking on deaf ears. It is very disappointing.
The lion mothers were clear that the children's perspective was missing from the BPA selection when the selection was announced, and now we see the consequences of this. When the committee lists tube feeding and stoma as possible cases of doubt for being able to have BPA, the Løvemammaen really start to wonder what kind of experience and competence these people have. It is not surprising that parents today can handle ostomies, tube feeding, medicines, ventilators, emergency situations and other "health care" in the home (without requirements cf. the Health and Care Services Act), but not well-trained BPA assistants. The parents are neither professionally trained health personnel nor further trained in child intensive care, yet this is exactly what is happening as we speak in the many municipalities that believe that the same tasks require specialist training. This is nothing less than a very good example of how this can be nicely organized in a BPA scheme. The essential thing has been that the parents have received good training from the specialist health service that follows the child, that the parents have gained experience and competence through good training and frequent repetition of the tasks they must perform, and that the parents are around the child enough to know the child's signals and symptoms. The lion mothers fear that we will have many dead children under municipal authority in the coming years if this is adopted.
It is the case that organizing services via home nursing for some children is actually dangerous – not just irresponsible, but life-threatening! This message has certainly not gone down with the BPA committee. For many years, we have heard the BPA supplier Uloba shout loudly that BPA is not health care - and it is quite right that they mean it! They can happily be a BPA provider for people without a need for health care, but the BPA committee should allow other providers who can and want to handle health care to be allowed to provide it.
Children cannot tolerate the constant replacement of personnel as is the case in home care. Children need predictability, safe and trained adults who know the child and can interpret the child's signals. If the health care is provided by a person who does not have sufficient training, knowledge and experience specifically for the particular child in question - whether the person is unskilled or skilled - there is also a very high risk that the child may be exposed to inappropriate services with fatal consequences . Here, BPA could be a much safer and more secure way of organizing health care, precisely because there will be a small number of people who interact with and look after the child, in contrast to the constant changes and variables you get through the rotation in home care. Consequently, the municipality will not deviate from the way they assess soundness if we do not ensure the right to health care in BPA. Today, they have a dangerous way of thinking that says that professional competence is the only thing that can ensure soundness. Although the dissent proposal states that it should be up to the individual to assess whether one needs specialist expertise, this will never become practice as ultimately it will still be the municipality that has the overall responsibility for the service provided is justifiable. Therefore, the dissent proposal is completely unrealistic and far removed from reality. NOU's proposal is even worse and will not make it possible to organize health care in the BPA scheme at all. This will be downright dangerous for many of our members.
The lion mothers have unfortunately experienced that the municipalities' way of assessing soundness has claimed children's lives. This cannot continue! Therefore, health care must become a right in the BPA scheme.
Another major disappointment in the BPA committee's statements is that they still believe that special agreements are needed if a person is to be able to use their assistants in hospital. This also shows that knowledge is lacking. Many of our member families experience when hospitalized that they do not get the relief they are entitled to. The specialist health service and the municipality never agree on who should cover the costs, with the result that the parents are exhausted while waiting for a decision that never comes. It does little to help that there are unclear cooperation agreements between hospitals and municipalities. The families who rarely experience good relief with BPA in hospital are the families whose municipalities understand that the need for relief does not disappear when the child is admitted. Several municipalities have actually written down in their BPA decisions that the decision also applies to admission to hospital. They bear the cost as a matter of course. This is what the BPA committee proposed should have been the statutory requirement.
Again, we come back to the fact that the competence and experience of living with chronically and seriously ill children with large and complex needs was completely lacking in the selection.
The result, if the content of this NOU is adopted, is that families who have children and young people with chronic diseases will be deprived of the opportunity to live free and equal lives. Instead, they will be fed up with piecemeal municipal services and a life of isolation, without opportunities to participate in kindergarten and school, leisure activities, social gatherings and cultural experiences, and holiday trips. In the worst case, it will also ultimately cost lives.
Children and young people with chronic and serious illnesses have once again been left at the edge of the ditch. It is obvious that no one in the BPA committee has chosen to fight for the seriously ill children and their families. The human rights of this group were certainly not that important to safeguard, as long as the "healthy" disabled people get what they want. There is no equality in this.
BPA or SPA
From NOU: The committee's majority believes that the scheme should have a name that best reflects what the scheme is intended to be for the individual who needs it. The name should also clearly bring out the most central aspect of the scheme, which is that the individual should be able to take responsibility for and manage their own life by managing their own personal assistance scheme. The scheme is therefore proposed to change its name from user-managed personal assistance (BPA) to self-managed personal assistance (SPA). Four of the committee's members (Sonja Jennie Tobiassen, Sverre Fuglerud, Vibeke Marøy Melstrøm and Tove Linnea Brandvik) believe that the name should be changed to Borgerstyrt personal assistance (BPA).
The lion mothers support the minority's assessment.
BPA is already a well-established abbreviation for the scheme and familiar wording and can in no way be replaced by "SPA" (which also has a completely different meaning), but the most important thing is that BPA must also be able to be a scheme for children and young people and people with developmental disabilities. What these have in common is that it is not the service recipient himself who controls the scheme, but parents, guardians or other close people in these people's lives. "Self-managed personal assistance" would therefore be an unfortunate name for a service that should function as an equality scheme for all people with disabilities - not just the "healthy disabled".
Organization in a municipality or state
Løvemammaene believes that in order to ensure the right to health care in the BPA scheme, the scheme should also remain in the Health and Care Services Act. However, we also believe that BPA must be included in the Equality and Discrimination Act to strengthen the principle of equality. To elaborate on why the Løvemammaen prefer not to retain BPA in the health and care legislation, this is about the connection between the current (lack of) opportunities for coordination and interaction across agencies, and many of our children's needs for a combination of several health and care services. We can hardly see that a combination of e.g. BPA, health care in the form of a nurse in BPA, respite housing and care allowance will be combined and coordinated if NAV is to process an application for BPA, while the municipality will process the other. We fear that it will be virtually impossible to get health care in the BPA scheme if BPA is moved out of the Health and Care Services Act. We also fear that centralized case management in the NAV system could work against the committee's purpose. We consider that retaining BPA in the Health and Care Services Act, while strengthening it with regulations and improved legal authority, and also incorporating it into the Equality and Discrimination Act, will be the most appropriate and at the same time ensure equality for those who do not need so-called health care. The Løvemammaene believe that what emerges in the dissent of requirements, as well as that BPA must enter the national insurance to become an equality tool, is just as possible to achieve in the Health and Care Services Act. We must make it clear that a placement in the Health and Care Services Act presupposes that the legislation is strengthened to such an extent that the municipalities' right to self-governance, with consequent enormous municipal differences, is reduced. User management must be a leader in the new legislation and regulation on BPA.
We must also say something about the fact that if BPA, as well as the approval and follow-up of such schemes, are to continue to be a municipal responsibility, we cannot have it so that employees of the municipality can overlook and override statements from e.g. doctors in the specialist health service who follow up the applicant and/or the applicant's own statements when the need for BPA is assessed. We cannot assume that the employees in the municipalities have in-depth knowledge of many of our children's complex needs or the lives we live in. Many of our children have such rare and complex conditions that even the doctors often fall short and have to seek help and information from doctors on the other side of the globe. How then is a case manager in an office to be competent enough to put himself above the doctor? The lion mothers firmly believe that statements from the applicant and responsible doctor must always have the most weight.
It must be up to the families, even if BPA and the role of supervisor are the right thing to do. If having BPA in the municipality is to work, a change of attitude is needed. It is not an overwhelmingly impossible task to be the supervisor of your sick child, as many parents are told it is by the municipalities. We want to emphasize that our experience in getting BPA in place is just as demanding as the situation before BPA. It will be important to gain recognition that absolutely all health and care services require a part of parents - regardless of how it is organised. However, no other service ensures equality to the extent that BPA does.
There must also be systems in place that ensure that the granting of BPA and the number of hours are no longer dependent on where you live. There are huge differences from municipality to municipality and in big cities: from district to district. There is no more or less need for assistance at Toten than in Halden. Families cannot see themselves having to sell their farm and land in order to get the help they need and are entitled to in order to live normal lives and not go to their knees from exhaustion. Both what it is, what it entails, is organized and not least – raising the competence of case managers to be able to assess the needs of a person.
Equality tool or health scheme
From NOU: "The scheme must be defined as an equality tool and not a health scheme. The committee assumes that a health scheme is a scheme whose main purpose is to safeguard health, by preventing, treating and facilitating coping with illness, injury, suffering and reduced functional capacity. The committee perceives the mandate as meaning that the future scheme must be designed and set up based on a different main purpose than safeguarding the person's health, namely to contribute to the individual achieving equality, equal opportunities and equal rights as others in society. A scheme that is designed and organized based on such a main purpose can be defined as an equality tool and not a health scheme."
The committee's clarification that BPA is not a health scheme is unqualified. It's not so black and white. The lion mothers want to clarify once again that illness/health and impairments are often linked. One does not exclude the other, on the contrary. Excluding health in BPA is precisely what, as of today, means that BPA does not function as a real equality tool for many. We fear that by emphasizing that it is not a health scheme, this will be an argument municipalities use to reject applications for BPA that include so-called health care, as they already do today. Safeguarding health must therefore be part of BPA and form part of the definition of what a BPA scheme includes.
BPA in all arenas
From NOU: "The assistance must be able to be used in all the arenas in society where the individual needs it, in order to contribute or participate."
The Lion Mothers support this and will particularly highlight the need for BPA in kindergartens, schools, after-school programs and leisure activities.
Clarify what the scheme is and includes
The lion mothers support a clarification of what BPA is intended to be and include, and that in the future there should be as little doubt as possible about what BPA is and includes. The non-exhaustive list from the NOU committee is, however, missing an important point about health care that we in Løvemammaene believe is indispensable if this is to become a real equality tool.
The point we are missing is, as a suggestion:
"Healthcare services that the person depends on in everyday life must be included in the BPA scheme as long as the person (guardian/guardian) wants it."
This point is absolutely necessary to ensure equality and health in BPA.
The hour limit
The lion mothers are clear that there should be no hourly limit for being able to receive BPA. We represent a very broad group of children and young people, both those in the palliative phase, where their lifespan is uncertain, and children who are expected to recover within 1-2 years, and everything in between. It must be the need that determines, not the number of hours.
The requirement of long-term need
Løvemammaene partially supports the committee's proposal that the requirement of long-term need be made more concrete into a need that will last more than two years or a remaining life expectancy of less than two years, but we have an important clarification!
Many of Løvemammaene's members have short palliative courses of less than two years where BPA will be the best way to look after the service needs of these children and families. Such clarification is therefore necessary to safeguard this group's right to BPA. At the same time, we have children who contract serious illnesses/injuries, but where they are expected to have good prognoses/to recover completely within two years. In the period towards recovery, however, the need for nursing and care will be very great and could trigger a need for BPA. The lion mothers believe that these families must also be able to be covered by the right.
BPA at night
Løvemammaenes supports the committee's proposal that the right should also include personal assistance at night, even if the person does not have a continuous need for it, if it is of significant importance for the person's welfare situation that the assistance is provided as BPA.
The lion mothers do not support the committee's subsequent precision that this presupposes that the municipality cannot document that it will entail significantly increased costs for the municipality to cover the need with BPA. For the group Løvemammaen represents, namely children and young people, we learn that point-by-point services are often not a favorable solution for them and that such an organization can be downright dangerous. The child's best interests and the family's overall situation must at all times be highest on the priority list - not the municipality's financial interests.
Equality and discrimination
Løvemammaene supports that BPA should also be regulated in a separate provision in the Equality and Discrimination Act §20 a.
The lion mothers want to emphasize the importance of the CRPD being included in the legislation. Norway cannot continue to ignore the UN's criticism. We will never get real equality without an incorporation of the CRPD into Norwegian law. Bringing BPA into the Equality and Discrimination Act will be a big step in the right direction. The lion mothers also believe that the concepts equality tools, freedom and equality should be mentioned as a right for more than just the individual. BPA as an equality tool ensures equality also in the form that the whole family can live more equally with other families. The whole family gets more freedom and BPA for a family member becomes in reality an equality tool for the whole family. We must get a clear family perspective into the new BPA legislation.
The lion mothers believe that the CRPD convention and the provisions therein must be governing for the entire administration of BPA.
BPA must include health care
The lion mothers want to make it clear that sick children are first and foremost children, and that a child's life and a family life cannot be lived again. If the BPA does not include the right to health care, this will be depriving the children and families of life itself.
From NOU: "Necessary services must be provided regardless of "target group", and include all people who need personal assistance with the tasks of daily life. The needs covered are not regulated in detail, and will naturally vary from person to person."
Health-related tasks (health care in BPA) are also included as daily tasks for those who need it.
The lion mothers will emphasize that health services must be able to be delivered through the equality tool BPA and that professionals can be employed and paid as professionals. If the service is to be safe, responsible and equal, it must be included in the law and become a right with health care in BPA.
The patient and user ombudsman has stated: "Some of the users have also had health services included in the scheme. Here we have seen a number of challenges in relation to ensuring soundness, as the decisions have been deficient. The ombudsman reminds the municipality of its responsibility to ensure that the scheme is sound.
The lion mothers are clear that the fact that the decisions have been flawed is not a good reason for not granting the right to BPA if there is a need for health care. It is entirely possible to both write good resolutions and ensure soundness when carrying out healthcare tasks in a BPA scheme. Good training must be provided for those who are to make the decision so that the decision illuminates what is important. The body that writes the decision is responsible for ensuring that the service is sound regardless of the choice of organizational form. It is just as possible to achieve good sound arrangements within BPA where requirements for education are entered for one or more employees in the scheme, which it is possible to achieve soundness if the municipality's health and care service provides the service. In fact, the Løvemammaene believe that there is a better opportunity for safety in small BPA teams that receive good training.
The Løvemammaen believe that competence and education do not equal soundness alone. For our members, the security of a few well-known carers is extremely important, both with and without health care in the BPA scheme. For example, the municipalities cannot call it reasonable to use home nursing care for parenteral nutrition, where far too many different employees have to carry out a complicated, sterile procedure that the specialist health service says requires frequency and a small number of hands. Parents do this procedure themselves, without any health education to be sure, but it is only after good training and frequent execution that minimizes the risk of making mistakes that can cause life-threatening complications. The same applies to other healthcare tasks that require a high degree of precision and training in order not to make mistakes. Getting good training in medical equipment such as a respirator and get good training in its use, because you work closely with a person in a BPA arrangement, ensures safety more than if the same tasks are to be carried out sporadically by someone who is trained in general nursing and works in home nursing with mainly the elderly people with completely different needs.
The lion mothers therefore react strongly to the committee's understanding of health care and BPA. With such an understanding, BPA will not function as a real equality tool. A great many of our member families need varying degrees of health services included in the BPA schemes. If health care is left outside the BPA and is up to each individual municipality to decide, then an important group of people is excluded from participating in society on an equal basis with others. This is about equality, development opportunities and freedom to choose. The Lion Mothers are very adamant that health care must be enshrined in the BPA, and only in this way can an actual assessment be made based on individual circumstances, soundness and other professional assessments.
The lion mothers agree that a scheme that will function as an equality tool must also include taking care of one's own health, as the committee writes. Based on this, we would like to emphasize again that a BPA scheme that does not include health care can never be called an equality tool. The main purpose of a BPA scheme must be to ensure that the individual lives a full and equal life. In order to be able to reach the main goal, it goes without saying that you get help to take care of your own health by e.g. medication, inhalations, tube feeding or stoma care. The mother lions fear that "primarily an equality tool and not a health scheme" will make the process of getting a BPA scheme for children with complex needs even more difficult than it already is and that the municipalities will use this as a basis to deny BPA to these children. There will again be discrimination on the basis of whether you need personnel with health education. With ordinary municipal services, you are deprived of freedom, and experiences that are important for a good quality of life because you are locked within the municipality's boundaries.
There is also a need for specially adapted services for children with complicated/complex needs. Children cannot tolerate the constant replacement of personnel as is the case in home care. Children need predictability, safe and trained adults who know the child and can interpret the child's signals. There is a great risk that the child may be exposed to irresponsible services with fatal consequences when, unfortunately, the municipality does not set up its own, safe teams around the child.
Current legislation does not protect these children. BPA is a fantastic opportunity to ensure safe help for children and their families. At the same time, it enables families to live active, independent and equal lives.
The lion mothers are anxious that this committee has not secured these children better with their statements. We therefore hope that the committee will take this seriously. There is no fulfillment of the Convention on the Rights of the Child or the CRPD until the right to BPA applies to everyone who needs assistance - including children who need health care.
Obtaining documentation
It should be at least an equally important requirement to obtain information from the child's follow-up doctor. There are very many children who have special diagnoses that even the specialist hospitals know nothing about. It is absolutely not appropriate to only obtain a statement from the nursery school/school when such decisions are to be made, as the committee writes.
The specialist health service - important professional competence
It is clear to the Løvemammaene that there has been a lack of someone with extensive knowledge about children with disabilities, serious/palliative illness or rare diseases, as there is no mention of statements from the specialist health service in a single word when decisions are to be made about BPA. It is absolutely necessary that opinions are obtained from specialist health services if the child is followed up there. It can be very important in terms of ensuring that the child receives proper help and follow-up that the pediatrician makes a statement about what the child's needs are. What the parents who know the child best consider should also be given great weight.
Mentions again that it is extremely important that there is also a requirement to obtain statements from specialist doctors who follow the child. It is that statement that must be emphasized and carry the most weight. The lion mothers repeat that it is bad to see that the specialist health service is not mentioned with a single word in this context. Many of these children who really need BPA in nurseries and schools have very complex needs and/or serious illness. Where a high degree of familiarity and continuity is required in order to be able to observe and assess the child correctly. BPA is precisely an organization that ensures continuity and a good knowledge of the child. A BPA assistant works with the child at different times of the day and gets very used to observing the child in different situations.
Decisions can quickly be made about the organization of services that will provide an offer that is not justifiable if the specialist health service is not incorporated and their opinions are weighted in such decisions.
From NOU: "The committee proposes that the body in the municipality that is given administrative responsibility for self-managed personal assistance should not be able to grant hours for this in the nursery school, the after-school program or the school, if the decision-maker for the nursery school, the after-school program or the school does not recommend it in the arenas for which they are responsible. This is based on the fact that the decision-maker for the kindergarten, the after-school program or the school will be the closest to assessing the concrete necessity of having self-directed personal assistance in these arenas compared to organization and other offers, etc.
This is a complete crisis, for lack of better words! Again, we are back to the result of the lack of a children's perspective in the selection and point out again that the specialist health service must be listened to here.
What BPA can be used for, including healthcare
The committee has drawn up a list of what BPA can be used for. It says, among other things: "to relieve persons with parental responsibility for children living at home who need personal assistance, cf. the Health and Care Services Act § 3-6 no. 2"
The lion mothers believe that it must be written: "to relieve persons with parental responsibility for children living at home in need of personal assistance, cf. the Health and Care Services Act § 3-6 no. and/or health follow-up.
From NOU: "In principle, personal assistance does not include healthcare services that require healthcare expertise. ... At the same time, there is a line between what each of us can and should take responsibility for looking after ourselves and what should or must be left to personnel with health-related expertise. The committee therefore proposes that the limit for which tasks related to taking care of one's own health are covered by self-directed personal assistance should be drawn towards tasks related to one's own health that are of such a nature that they require health professional competence. Some of the tasks that are delimited will be of such a nature that there will very rarely be any doubt that they are healthcare services that must be performed by personnel with healthcare expertise and which are not covered by self-directed personal assistance. Examples of this are intravenous treatment, rehabilitation after trauma and injuries, environmental therapeutic measures and monitoring of vital functions such as the use of a ventilator. There may be more doubt about other tasks. Examples of this can be injections, tube feeding, disposable catheterisation, changing ostomy bags and observations of certain types of wounds. Which tasks related to their own health the individual can take responsibility for themselves, possibly together with a staff manager, may vary from case to case. The decision related to which of these tasks should be included in the self-directed personal assistance."
Several parents in Løvemammaene have children who need intravenous infusions, which is mentioned quite firmly by the committee as a task that there will rarely be any doubt that is health services that must be carried out by personnel with health professional competence. The Løvemammaene will inform the committee and decision-makers about this. In Norway, many parents are trained to give intravenous nutrition at home (HPN - home parenteral nutrition). The national expertise team for these children, at Ullevål Hospital, recommends BPA for these children. They have better experience with the use of BPA than home nursing. Many experiences have been made that using health personnel from the municipality's home care is dangerous for these children. The lion mothers react strongly to the fact that there are substantial statements that such treatment is not covered by BPA from a committee without expertise in this. We are very concerned that such wording will exclude BPA for children with a need to obtain their nutrition in that way. There are several BPA schemes around these children as of today. Several of these families have experienced getting their lives back after receiving BPA. It will spread fear and concern if something is specified in new legislation that can give the municipalities the opportunity to deprive these families of BPA, an arrangement they are completely dependent on to get safe enough help and relief.
The health and care committee is therefore strongly recommended to read the consultation input from one of the foremost paediatricians in this area in Norway, Jarle Rugtveit, on behalf of the Pediatric Department at Ullevål Hospital.
The same applies to children with LMVT/home ventilator treatment, which is also mentioned above. Children in need of LMVT/home ventilators have just that because they are too healthy to be admitted to hospital, but at the same time depend on it to live. We emphasize that children who live at home are not patients, but children in a family. Very few parents are trained intensive care nurses or pulmonologists, and have therefore received training from the hospital in handling breathing aids/home respirators so that they can ensure their children a safe and good everyday life. Similarly, BPA assistants can be trained by the hospital.
The fact that the committee also highlights tube feeding and stoma as doubtful cases for being able to receive BPA is just as hair-raising as the rest. Again, we come back to this with good enough training, frequent training and familiar, safe carers. I would think that the committee thinks that changing nappies or giving painkillers is also health care. All children must eat and all children must poo. Neither part is healthcare, but how they do it is often different.
It is a mockery that the committee (and some municipalities) believe that just because you have some health education you can automatically deal with children who need intravenous nutrition, LMVT or other conditions. It is actually completely wrong and a life-threatening way of thinking that can in the worst case take the life of a child. It's all about good training, continuity and training. It is strange that our children are not dying like flies considering how many unskilled parents without a health professional background there are who day and night provide health care around the country at all times. It is something the committee and the politicians are asked to reflect on. In fact, research shows that children who are looked after by the municipal authorities have far more frequent and acute admissions, and they spend longer in hospital each time, than children who are looked after by their parents. It is then reasonable to think that BPA assistants who receive the same good, thorough and frequent education and training as parents, will be able to contribute positively to these statistics - in contrast to what will happen if you exclude health care from BPA and leave it to the municipality.
The children we represent are first and foremost children. They cannot be punished because they unfortunately have an illness or injury that requires health care. They also want to experience life on par with their healthy peers!
The lion mothers are also shocked that the NOU conveys that if training must be carried out by personnel with health professional expertise such as health services, then it should not be covered by BPA for that reason. Most parents of sick children need to be trained by healthcare professionals in many things they have never come across before. However, they become very good at what needs to be done as parents do this very often. It is the case that it is both desirable from parents and the municipality that the training these parents pass on to assistants who will work with their children is quality-checked by a review at the hospital. It is also common for an entire BPA team to work with a child after a hospital stay to come to the hospital and receive new training. It is hair-raising to read that because a task requires the training of healthcare personnel, it is proposed to be exempt from BPA. This will lead to an extreme exclusion from being able to use BPA as an equality tool and this will especially affect families with chronically ill children. It will also mean that it will be even more difficult to get BPA approved for adults as well. Most people with functional impairments and chronic illnesses learn to carry out tasks for the first time in hospital. This way of thinking must be completely abandoned.
The lion mothers experience that no consideration is given to the fact that situations around children who need assistance are different from those of adults. This perspective is generally not taken into account to ensure BPA as an equality tool for children (and families) in need of BPA.
It is a terrible shame that there was not a representative on the committee who could secure the children's vote. The lion mothers spoke clearly about this after the government had appointed the committee. We were not heard. Unfortunately, we are seeing the result of that now.
BPA into kindergartens, schools, leisure programs and working life
Kindergarten
The lion mothers support the committee's opinions on the importance for young children and BPA in kindergarten. It is expected that Norway listens to the Convention on the Rights of the Child and lets children be children in all arenas of life. Children's sense of mastery is very important for children to feel safe in different environments, want to challenge themselves and create good memories. In order for children in need of assistance to be looked after in a responsible and long-term way, BPA is the only service that can fulfill this. We believe it will be very important to include BPA in the Kindergarten Act.
Primary school
The lion mothers support everything the committee writes about being able to use BPA in school and after-school arrangements. We believe that there must be direct legal texts about the use of BPA in everyday school life so that it cannot lie in either school management or the municipality's goodwill as to who gets it or not. The Løvemammaene have sent clear submissions to the new Education Act stating that the right to BPA in school must be enshrined in that legislation. We have received hints that they do not want to regulate BPA in the new Education Act and are therefore very pleased to see that the committee believes that it will be important work to ensure equality, progress and independence for children and young people with disabilities.
Especially about the after-school program
During the after-school time, there should be a self-evident right to BPA to be in the after-school program when the child reaches the age at which other children no longer use the after-school program. This cannot require any more clarification than that the parents want it.
Individual training
The Løvemammaen believe that if the arrangements and design are to be based on the prerequisites for each individual student's needs, it is necessary that the IP is quickly in place regardless of the size of the need for help. Individual training entails increased costs and as long as the legislation appears to be indicative, equality, design or soundness will not be ensured. Budget and capacity present challenges where the municipality has poor finances. Earmarked funds must be put in place to ensure that facilitation and design are ensured in all municipalities and districts.
The Løvemammaene support the ministry and the committee in that there should be a right to personal assistance or physical adaptation, independently of each other and in addition to individually adapted training in kindergarten, school, the after-school scheme, higher education and the vocational school. The lion mothers see this as very appropriate, as a clearer distinction can be made than it is today between training, educational provision and what is not. It is high time that BPA in kindergartens, schools, after-school programs, higher education and vocational schools is enshrined in law, so that the person concerned is taken care of in all ways, but also that teachers can teach and at the same time know that the student is taken care of both mentally and physically , within the framework and prerequisites the student has.
The Løvemammaen puts the term personal assistance in this context in the same way as it is described in the NOU, including that the assistance can vary both in scope and tasks, and can, for example, be help in connection with undressing and dressing, meals, medication, visits to the toilet, social activities during free time, communication, movement, carrying bags and equipment and help to follow the training. Personal assistance can be provided by people who are not employed as teachers. A pupil may also be entitled to personal assistance under the Health and Care Services Act and the Løvemammaene will make it clear that it is important to assume that both factors can be decisive for one and the same person. You must get services within both pieces of legislation if the need for assistance so requires. By using BPA instead of assistants employed through the school, you will get predictability, continuity and stability in the child's everyday life. The parents of the child who receives BPA at school then also have the opportunity to work, even if the child may have to be at home one day, as the BPA assistant follows the child and not the school.
Expert assessment
By removing the requirement for expert assessment for the recommendation/measurement of hours of assistance or physical adaptation, it will be possible to facilitate case management for pupils who need assistance, but who do not receive special education or are followed by PPT ordinarily. One argument is that it will also facilitate case processing at PPT and free up capacity for other system work. But in reality, there are only a small number of cases that include this particular group of students, so that any visible freed up capacity will be relatively limited. It is also indicated that professionals such as children's occupational therapists, vision pedagogues and audio pedagogues can be responsible for such an assessment. In smaller municipalities, these are professional positions that very rarely exist. Where should the recommendation come from?
For children and young people who have complex considerations that must be taken into account, and who both need physical adaptation, personal assistance and special education decisions - and for some also adaptations with partial exemption from compulsory education - measuring the scope in hours in practice could be from three different agencies (physical adaptation, personal assistance, special education with a teacher and/or assistant), with different funding and different calculations. It is not clearly stated which bodies these will be, or how they will coordinate their decisions.
For PPT, the assessment of the need for special education must be based on what other resources and facilities are available. If it is not known how many hours are recommended as personal assistance, in other words, PPT will not be able to know the extent of this support when recommending special education.
For a pupil (and guardian), this will also mean dealing with different bodies with different durations for a decision, which does not necessarily have to be renewed at the same time. Situations can thus arise in connection with a pupil where the assistance decision is less than expected, and who is then responsible for ensuring that the whole is taken care of for the child/pupil? If in the last instance it is to be PPT, it could entail considerable additional work, in the process of having to point out that the child's needs are not adequately met, and another body may then have to change its decision.
With new cooperation legislation coming into force in August 2022, overall coordination and cooperation will ideally be easier, but this can also turn out very differently in the individual municipality and at the individual school. Without a defined responsible body that must be able to decide whether the whole of the child or young person is adequately taken care of, this could lead to great uncertainty and extra work in the application process for guardians. If PPT is thought of as the responsible body, one can also fear a longer case processing time before an expert assessment is completed, pending the recommendation of other bodies regarding the measurement of hours for assistance.
Assessment basis
From NOU: "These agencies have both expertise and responsibility related to assessing and looking after the needs of children and young people with special challenges. It will therefore be important to ensure that the assessment and recommendation of the kindergarten, the after-school program and the school are included in the basis for whether hours for self-directed personal assistance are to be granted while the child or young person is in these arenas."
The lion mothers would like to point out that nursery schools, schools and leisure facilities often lack expertise in what BPA is and how it can work. It will affect the assessments of these bodies. Claiming that the nursery school, the school and the after-school program have the competence to assess and look after the needs of children and young people with special challenges is a somewhat unvarnished claim. They have the best expertise in assessing and attending to the needs of able-bodied children. There is too little knowledge and competence among teachers or principals about children with complex medical needs, or other complex challenges.
Requirements for youth/young adults
Regarding proposals for requirements for those over the age of 18 to be willing and able to cooperate, and ultimately take over the role of supervisor, we wish to emphasize the importance of using discretion! The committee believes that the supervisor role should be unpaid. We believe that here it is important to bear in mind the quality of life of young people, including the need for socialisation, an extra job alongside studies and the studies themselves. Imposing/making demands to take on the role of supervisor in that phase of life can be too difficult for some in terms of studies and the financing of the studies, if they are to have an unpaid work role that makes extra work and/or study work difficult. Furthermore, such requirements are not placed on able-bodied young people/students. Having to have BPA during the study period should not burden the person - but relieve it. If parents want/can continue in the role of supervisor and the young person wants this, there should be room for this to free up the young people for extra work. Possibly that a BPA assistant is a staff leader to relieve the burden.
Vocational school and higher education
The lion mothers also believe that there should be a right to BPA when one is to complete higher education. As the arrangements are now, there is a patchwork of "point-wise" services that complicates getting one's assistance needs covered during education.
From NOU: "The committee believes that a self-managed personal assistance scheme should could be used in the kindergarten, in the after-school program and at school when children and young people have such a special need for this that it is considered necessary."
The lion mothers will have a clear right to this. Not a vague word like "should" which gives room to reject as many decisions as possible about this.
Disabled students and students with special needs have been given the right to suitable individual accommodation from August 2019. One point we at Løvemammaene are questioning is that the right to accommodation should not entail a disproportionate burden on the educational institutions. The Løvemammaen believe that no one is included until absolutely everyone is included, and believe that strict requirements must be placed on arrangements and design so that people who end up in these categories must be just as included as other people. People's right to inclusion should weigh more heavily.
Assistance and facilitation schemes in working life
Today's starting point is that BPA is not awarded to cover the need for personal assistance for the time a person is in work. The municipality can still assign BPA to this as well, which some municipalities do. The lion mothers believe that this should be the rule, rather than the exception, and that municipalities that perform this service must be seen as a mentor and a model municipality for other municipalities in the country.
The Norwegian Labor and Welfare Agency is responsible for disability assistance in working life and a number of other work-oriented measures that can help facilitate the disabled to enter or retain work. The Løvemammaen believe that it is important and useful that various initiatives in this field are made well known. Not only for the employee, but also for employers.
Allowance for improving functional ability in working life and in daily life
The purpose of benefits under this section is to prevent exclusion from working life, create a more inclusive working life, lead to more people coming into work, and reduce sickness absence. The Løvemammaene believe that these are important factors in the everyday life of many people, and the Løvemammaene fully support this benefit scheme.
Basic freedom and rights
Municipality of residence
The Løvemammaene believe, like the dissent, that decisions on BPA should be linked to the individual, and not to the municipality of residence. Many live outside the municipality in which they are registered for shorter and longer periods, for example because they study or work outside this municipality. Decisions must therefore be linked to a registered address and not the municipality of residence, and decisions must be able to be used regardless of place of residence, so that it becomes possible, among other things, to take an education, take part in work and have the same right to travel and participate in society as others.
The right to move freely
The right to be able to move freely, also outside national borders, should be no different for people with disabilities. The Løvemammaen believe that BPA should be covered when travelling, within the framework of employment law rules, collective agreements and other agreements. The right to move freely also outside national borders must apply to disabled people on the same terms as the rest of the population.
The lion mothers agree that the scheme must be financially sustainable over time and are also surprised at how little data there is on the benefits of a BPA scheme in relation to the costs. We agree that both the gain that can be measured and that which is not so easily measured in kroner and øre must count when setting up this calculation.
We have seen that a BPA scheme for many leads to greater participation in society, education and working life. This also applies to the families around the person with the BPA scheme. This speaks volumes for the fact that a good BPA scheme is also good social economy.
At the same time, we would like to emphasize that it cannot be a requirement and future employment, education and career to be able to have a BPA scheme. Many of our members have children who will not be able to complete an education or have a job in the future. Several of our members also have children who they know will not grow up. For these families, quality of life, activity, independence and dignity will be the gains you reap through a good BPA scheme. These aspects must be said to be equally important and beneficial, both for the person in need of BPA and the family.
Complaints to the discrimination board
Løvemammaen supports introducing a new § 20 a on the right to individual accommodation in the form of BPA in chapter 3 on universal design and individual accommodation. In addition, the committee proposes that § 20 a be added to the list of provisions in the first paragraph of § 12 of the Equality and Discrimination Act.
This is a very important move for people with disabilities, to ensure equality. Unless one incorporates BPA into these pieces of legislation, one chooses to let people in need of assistance and the right to live equal lives rather continue to be discriminated against.
BPA combined with other services, such as respite housing
The Løvemammaen are very positive that some municipalities choose to incorporate certain health services into BPA schemes. The positive effect will be that there will be few people to deal with, the service will be predictable and comprehensive. This is extremely important for our children who are in need of health care, live in an institution or have a Chapter 9 decision on the use of coercion and force. Whether a service is to be regarded as a health service or not cannot be up to a case manager, here the specialist health service and professionals must be listened to and there must be no room for the municipality to check higher professionally competent bodies such as the specialist health service.
The Løvemammaene believe that if the BPA service is to be able to be self-governed, sound and predictable, one must open up the possibility of using BPA in an institution - regardless of whether the stay is long-term or temporary.
Løvemammaene believes that the regulation of service needs in the Patient and User Rights Act § 2-1 d fourth paragraph must be abolished. It is also necessary that the need for help is looked at with a comprehensive survey, regardless of whether it is in an institution or at home.
Excess/practical assistance
Løvemammaene does not support the idea that the purchase of services that "any able-bodied person" has the opportunity to do themselves should be utilized by other organized offers within trade, transport, place of study or work. It already narrows in on unjustifiable decisions that are made today for e.g. sight and hearing impaired and provides fertile ground for unsound controlled services. If you e.g. blind people must be allowed to go to the store like everyone else, and they cannot demand that you have to buy goods online! It is discriminatory. Disabled people must be able to have their house cleaned, windows washed and drains cleaned without being forced to pay a deductible. No able-bodied people are then required by the municipality to pay for laundry help and similar services.
For children and young people, the same applies to making the bed, putting the shoes in their place in the hallway, tidying up toys and when the age comes - helping with housework.
Labor management
The lion moms believe that the supervisor role should be able to be paid/remunerated. As a manager, you have overall responsibility for the organization and content of the service. The Lion Mothers believe that parents should be able to decide whether they want to hire an assistant as a staff manager, as this may be appropriate and is seen as a relief decision. It is important that the municipality includes work management in the decision for the child, so that the hours of need that have been set are not lost. If parents wish to use a staff manager, such tasks are distributed and agreed in writing with an employment contract. The lion mothers encourage remuneration for employee management roles. Here we experience different practices with private suppliers and believe that when an assistant takes on responsibilities beyond the assistant role, the highest seniority should be given.
Starting point and framework for the BPA organisation
BPA is to be a user-controlled service, which the Løvemammaene fully supports. If the service is to be user-controlled, the service recipient must also be a supervisor. The exception comes for children and young people under the age of 18, and those of adult age who have been appointed a guardian.
The Løvemammaen believe it is very important that where an employee manager is needed, this has a great responsibility for safeguarding the person's interests against the approved BPA decision. In this way, the real user management and a common understanding of which work tasks the supervisor must do and what is the supervisor's "table" are ensured.
Shared understanding and a clarification of roles are key factors in the implementation of the BPA decision, and must be clarified before co-operation with an employee manager begins. A very important point in this context is that the more the framework for day-to-day management is restricted, the less real user management becomes. Therefore, in Løvemammaene, we would like to point out that role understanding is a central part in the introduction of an employee manager.
The Løvemammaen see it as important to speak up about future powers of attorney for people who use the service. In adulthood, one can e.g. develop dementia or you may receive a diagnosis that is progressive. This is important in continuing to look after the service recipient's own interests, so that you also get a user-directed service after such diagnoses have been made.
The lion mothers appreciate that the committee has taken our input that the scheme should include both those who can manage the assistant themselves and those who can manage the assistance with an assistant for information, and we know from extensive personal experience that BPA is an important and well-functioning scheme, also in situations where parents/guardians step into the role of supervisors on behalf of their children.
Work manager/employee manager
It certainly cannot be the case that only the person who is to receive the personal assistance is allowed to give authorization to allow someone else to act in the role. It must be possible for both the person himself or a guardian to write such a power of attorney. Otherwise, there is a risk of a gap in the legislation which means that those who, for cognitive reasons, cannot write a power of attorney themselves will also not be given the role of employee manager to someone else. It may happen that someone other than the guardian will be the employee manager.
The committee proposes certain requirements for supervisors and this is mentioned:
"In addition, the person must understand what it entails and be both suitable for and willing to be responsible for the organization and day-to-day management of the assistance."
The Løvemammaen fully agree that some people cannot or should not be supervisors, but at the same time we are skeptical that terms such as "understand what it entails" and "be suitable" are used without making it more clear what is needed for a municipality can argue that this is not the case. It is emphatically stated in today's guide that it is the municipality that has the burden of proof for a decision that a supervisor is not suitable. That decision can also be appealed to the State Administrator. Løvemammaene has experience that municipalities are too quick to say that someone cannot be a supervisor without actually knowing the person well enough or having knowledge of the person's competence. Several people have experienced that because people have been critical of assessments made by the municipality and have also spoken clearly about this, it is a fairly short way in some municipalities for a disagreement to be used against you, and for it to be turned upside down. Statements such as that the person is in too much conflict, where they refer to conflict with e.g. the awarding office and that parents cannot therefore be supervisors. There must be requirements for facts and background in order to make an assessment that someone is not suitable to be a supervisor and it should still be the case that you must seek to find good solutions where, if possible, are some shortcomings that can be covered with extra support or extra training. BPA suppliers are different and it is actually important that they are. Some offer extra follow-up, other providers do not.
Appointments
From NOU: "At the same time, consideration for the employer's right to control must be taken care of, so that the employer must also be able to refuse to employ certain people."
Here, the Løvemammaenee believe that by making such a clarification, one departs from the very principle of self-management and it is the supervisor himself who must decide who will work for himself/the child. We believe this could be an unfortunate wording that could lead to the municipality creating its own rules for who can be employed etc. The employer must of course make the supervisor aware of disadvantages they know about before employment.
Agreements between supervisor and supplier
The lion mothers are positive that more detailed agreements must be used between supervisors and suppliers, where it is clearly stated who is responsible for what.
From NOU: "For employee managers, however, the situation is different. In the committee's view, it cannot be expected that anyone other than parents with parental responsibility for children and young people under the age of 18 contribute with work effort as co-managers without any form of compensation."
This can only be considered discriminatory. The term "employee managers" must be removed when it comes to children and young people up to 16 years of age. It is parents who are supervisors in this age group, not the children themselves. Parents naturally attach great importance to the child's best interests in everything they do regarding the children's BPA arrangements. However, supervisors must be compensated equally. Guardians who receive care allowance must also be able to receive financial compensation for being a supervisor. In order to obtain BPA, the supervisor cannot be punished with free work in order to be allowed to live an equal life. No other people work for free.
The committee places high expectations on what a supervisor must do, take responsibility for and constantly ensure is in place. Nevertheless, the same committee believes that the supervisor must have that responsibility and do that job completely free of charge. We ask the ministry to look at financial compensation, even if the committee is against it.
Hourly limit
From NOU: "Local norms can be established which are used as a starting point for the specific and individual measurement of hours."
Local norms that municipalities can determine themselves are exactly what we do not want. Each case must be assessed individually. Determining local norms will lead to the discrimination we need to get rid of.
Fictitious, but highly realistic examples:
Sara, aged 12, has an anxiety diagnosis and a decision of 5 hours a week. She refuses school and is at home a lot, with little social network. Sara must be given the opportunity to organize the service based on needs and chemistry in the same way as other service recipients. Even if the decision is "small", it does not mean that it is less important, but more important. The service provider may be the only social contact Sara has during the week, it will be her support in a challenging everyday life. The lion mothers believe that the hour limit should be removed, all people regardless of need should have the right to self-managed services. If the municipality has control over hiring and organization, the service will work against its purpose and in some cases negatively.
Bjørn, aged 16, is blind and has a resolution of 8 hours a week.
The municipality has announced that the decision will be discontinued at the end of 2022, when Bjørn can get a service dog and buy services. The municipality justifies this by saying that he can use "right at home" solutions and rent films in the living room. The lion mothers believe that Bjørn has the same right to go to the shop to buy a milk or go to the cinema with visual interpretation as all other young people. Because it is actually the case that in a grocery store in Norway they change the organization in the store relatively often, so even if Bjørn gets "walking training" in two hours, it is not certain that the same store will be the same the following week. The need is then new "walking training/getting to know each other" in order to arrive at the milk that was needed to complete the lasagna. The municipality constitutes enormous discrimination when it comes to the visually impaired and is not responsive to needs that provide quality of life and should have been a matter of course.
The lion mothers agree that the current legislation, with a discretionary assessment if you need less than 32 hours per week of help, turns out to be unfortunate. As it is up to the individual municipality to decide for themselves whether they are entitled to BPA for a number of hours between 25 and 32 hours per week.
The advantage of self-determination, even with a number of hours less than 25 hours per week, is that the individual can manage the hours themselves when the need arises during the week. And not according to a set plan from the municipality, which can be more difficult to change when you need to.
The Løvemammaen believe that BPA must be recognized regardless of the number of hours, as the minority in the committee believes.
This will make BPA the independence tool BPA is intended for.
Løvemammaene knows that some municipalities, in collaboration with the owner of the decision, also convert support contact hours into the BPA scheme when a decision is made about this. By assigning rights to BPA regardless of the number of hours, the person can hire the "support contact" themselves and dispose of the hours freely together with BPA hours. The municipality will then avoid major administration and search for support contacts, as they are already part of the ordinary BPA scheme that the person has. In addition, it is felt that many municipalities struggle to obtain support contacts that remain over time. Whereas in a BPA scheme there will be more continuity in the work, as they have more working hours during the month. and gets a stronger connection to the person, which means that there is a greater possibility of staying longer in the working relationship.
The lion mothers see that in section 21.2.2 the committee has found no evidence that small BPA schemes will result in higher costs per hour than large schemes. But at the same time believes that small schemes can cause challenges on the administrative side. The Løvemammaen believe that the right to self-govern when to get help, who to help and what you want help for should lie to an even greater extent with the individual person/family.
From NOU: "An extension of the right to those who have needs that are below the hourly limit, but still have a particular need for self-directed personal assistance, could impose increased costs on the municipality".
The lion mothers are surprised that the committee contradicts itself on this point. The lion mothers believe that small arrangements do not need to be more expensive than larger arrangements per hour. The lion mothers experience in many schemes that the assistants stay for many years and can provide more stable employees than municipal solutions. The lion mothers refer here to a number of media reports in recent years, where repeated problems are new municipal employees who need training and no continuity in those who enter the home. The Løvemammaen believe that for children in particular it is important to have permanent, familiar and safe staff over time to create good relationships and build competence. We also want to emphasize the difference in pay and working conditions between a BPA assistant and a support contact. Norway should ensure good rights for all employees, and in this way you ensure to a greater extent as a family that you retain the employee over time.
Arena for the use of BPA
The lion mothers support the committee's proposal.
The Lion Mothers have received a lot of positive feedback on BPA entering kindergarten and school, because the child/young person then has familiar assistants with them in all arenas - assistants who have enough training and continuity in helping. In addition, children/young people enter a phase where help with intimate needs such as going to the toilet and challenges such as menstruation, puberty, sexuality etc. becomes difficult if you do not know the person who will help well.
Another aspect of this is that the nursery/school does not have to arrange substitutes when the assistant at the nursery/school is ill. The Løvemammaen have several examples of where the children have to be kept at home, as the assistant for whom the school has employment responsibility is ill and they cannot get hold of substitutes with the right skills or who have received training.
Continuation of the right related to the person and not the form of residence
The lion mothers support the committee's proposal for continuation, that it is not the living arrangement that determines the right to BPA, but the people who need the service.
Possibility of BPA when staying in municipal health and care institutions.
The Løvemammaen believe that it is important for children that well-known assistants join them in a relief home, so that continuity is ensured in the offer that is provided. Many of our children are seriously ill and have extensive procedures done every day. Certain procedures require good training and continuous training to be able to carry them out. In cases where the staff in the home only carry out the procedures when the child is there and they are actually on duty, there will not be enough practice to ensure a good and proper service. In those cases, the Løvemammaene believes that it is right that there is a provision that ensures the best interests of the child and that proper service can be provided regardless of where the child is.
Possibility of BPA when staying in the specialist health service's institutions
It is a big disappointment in the BPA committee's statements that they still believe that special agreements are needed if a person is to be able to use their assistants in hospital. This shows that the knowledge is lacking. Many of our member families experience when hospitalized that they do not get the relief they are entitled to. The specialist health service and the municipality never agree on who should cover the costs, with the result that the parents are exhausted while waiting for a decision that never comes. It does little to help that there are unclear cooperation agreements between hospitals and municipalities. The families who rarely experience good relief with BPA in hospital are the families whose municipalities understand that the need for relief does not disappear when the child is admitted. Several municipalities have actually written down in their BPA decisions that the decision also applies to admission to hospital. They bear the cost as a matter of course.
After all, these are hours the municipalities would have initially incurred costs for.
Private BPA suppliers
Requirements for public procurement
Løvemammaene sees it as important that the municipalities focus on more private providers having a license in the municipality, in order to give the service recipients a real choice, also in the choice of provider.
From NOU: "Measures for municipalities to enter into contracts with other service providers. The committee therefore proposes that a national approval scheme for private service providers of self-managed personal assistance be investigated"
Løvemammaene supports proposals to introduce a national approval scheme for private service providers, but believes that it is unreasonable to believe and expect that all private BPA providers can apply in all the country's municipalities. We therefore propose:
National approval scheme for all private service providers, to save resources in the municipalities by not needing their own procurement procedures, but that the municipalities have their own lists of suppliers to choose from.
BPA suppliers then report to the municipalities they can provide services to and end up on the municipality's list for which BPA suppliers you can choose from. This is also important in order to save those choosing a supplier time and effort. The lion mothers believe that small municipalities must have 5-8 private service providers on the list, while larger municipalities must have 8-15 private service providers to choose from.
The committee relates to "should" and "can" in text about free user choice. It must be avoided in the legislation. In order for BPA to be an equality tool, and to fulfill its original function (as the name stands for "user-managed personal assistance/self-managed personal assistance) all the country's municipalities must allow citizens to choose between municipal service providers, private service providers and possibly to create your own company.
Joint national training programme
Løvemammaene supports a joint national training program for supervisors, co-workers and assistants.
We agree with the committee that it is unclear who is responsible for the training (of the general things) of supervisors, supervisors and assistants, and what the responsibility includes.
The Løvemammaen are concerned that the various BPA suppliers have different practices and have different ways of being a supplier, but it is important to emphasize that the training for supervisors, co-workers and assistants must always be the same anyway. This can only be solved by national guidelines. Here, the Løvemammaene also want to offer help in such work on the design of a national training programme. User representatives are needed to create a good training programme.
Operating budget
Costs of having employees at work
In a BPA scheme, you will have expenses related to the operation of the scheme. The Løvemammaen firmly believe that you must have an operating budget to pay such expenses, so that the service does not become an unnecessary financial burden for the service recipient. The fact that documentation of real expenses must be provided is an important factor in pointing out that what the money is supposed to cover are actual additional expenses for the service recipient.
The lion mothers believe operating funds must exist and that it must be legislated. As of today, the municipalities have room to refuse operating funds, and give guidelines for what the funds can be used for. It must appear from the legislation that all expenses incurred by having assistants in the house must be covered. E.g. can 5 % be set aside for operating assets (both for municipal and private service providers). For arrangements with a small number of hours per week, which result in little money in the operating account, the municipality must cover expenses for e.g. holiday, accommodation, board and travel, armchair/work chair, desk/table, toilet paper and soap, etc. The person who needs BPA must never be subjected to extra financial burdens due to assistants, and must never be restricted in holidays, travel or cultural aspects, etc. The person themselves must be able to experience what they themselves want and can afford, and the rest must be covered by private service providers in the form of allocated operating funds, and/or the municipality.
Socially critical healthcare personnel
The lion mothers are very concerned that BPA must be defined as socially critical personnel. It was the alpha and omega of soundness for people with major assistance needs during the pandemic. It is high time that BPA assistants are recognized for the important work they do.
BPA for children and young people in palliative care
It is estimated that approximately 8,000 children and young people in Norway fall under the concept of child palliation as it is understood within the framework of the National Professional Guidelines. For those who have a need for healthcare that is of such a nature that healthcare expertise or training in such tasks is required, according to NOU "Self-governed is well-governed" will not be worthy of equality, freedom and opportunities for independent lives as long as this healthcare is to be excluded from BPA arrangement. These children and young people are also affected when special agreements are required, so that assistance can follow when the child is admitted to hospital. It is very serious that this is not explicitly addressed in NOU.
Efforts are being made widely to develop more comprehensive pediatric palliative care, with pediatric palliative care teams at hospitals and in municipalities. But without BPA with health care, a very central support will be lost for these families, and it will be very problematic to build up good palliative follow-up courses, with as good a quality of life as possible, for many palliative children and young people who already have BPA today, and for those who want it in the future.
Decisions, complaints and the State Administrator
Assessment of needs and scope
The Guide for case management states the following: "As long as the service offer maintains a reasonable level, and specific rights are not infringed (e.g. the right to BPA), the municipality has free discretion when it comes to the organisation, content and scope of the service offer." Although the municipality has a large margin of discretion, the municipality must not exercise a discretion that is random, or emphasize irrelevant or extraneous considerations.
The Løvemammaene see that "discretion" in the municipalities is in many cases assessed by employees who do not have enough expertise, time or trust in the specialist health service's statements. The family's wishes must also be emphasized. As a minimum, "discretionary assessments" should not be made until the case manager has met both the child and the family.
The lion mothers experience that the municipality believes that BPA is more expensive than other services. As long as this misunderstanding affects the assessments that are made both regarding whether one is entitled to BPA, but also the extent, the Lion Mothers believe that there should be earmarked funds for BPA in the municipal budget precisely to avoid procedural errors. Economics shall not be a basis for refusal.
According to their report from 2020, the municipalities (KS) state that the biggest challenge related to the allocation of BPA is that in many cases applicants have unrealistically high expectations of what they can be granted BPA for. It is pointed out that one of the reasons for this is that BPA is often highlighted from a political point of view as a tool for liberation and equality. The report finds that case managers in the municipalities often find that the current laws and regulations limit their ability to allocate so much service time that the applicant can live a completely free and equal life. The municipalities perceive that providing assistance for work and leisure activities falls outside the municipality's area of responsibility, because it is not considered a necessary health and care service.
Here, Løvemammaeneen believes that it is important that regulations specify what should be included in BPA lessons. BPA is something different from traditional health and care services and therefore it must be made clear what is to be included in the number of hours for BPA.
The lion mothers are very provoked when we hear or read about districts/municipalities that claim that people who apply for BPA are more demanding according to e.g. hour use! This is about bad attitudes and a lack of culture. It is time for competence enhancement for case managers and stricter requirements and rules to be able to hold that position.
We have the benefit of meeting a family that applies for more services and more hours than they need, because it is actually not that stylish to have people in the house at all times. The Ministry (and other readers of this input) are asked to reflect on how stylish it is to have intercourse with the movements and sounds that accompany it when assistants sit in the next room, or how easy it is to argue with a partner, run out of toilet paper or fart with assistants in house. No one applies for BPA for fun.
From NOU: "The report concludes that the current legislation does not provide sufficiently concrete guidance with regard to the allocation of BPA and the measurement of hours to be able to ensure a uniform practice across the city districts. There is no central guide for measuring hours, and no districts have developed their own guides. According to the report, this means that those who apply for BPA are at the mercy of the individual case manager's assessment. It also appears from the report that the districts lack a clearly defined place to turn to for support in interpreting the regulations. Furthermore, it is difficult for the individual case manager to build up knowledge about the interpretation of the regulations. The report further points out that both suppliers, districts and user organizations have stated that the BPA scheme is a demanding scheme, and that the regulations can be contradictory and unclear."
We would like to emphasize that, even though the report refers to a sometimes difficult practice, the BPA is the scheme that for the sick and/or disabled works very well for the vast majority of people in Norway. No other organization of services ensures equality to the extent that BPA does. The Løvemammaene believe that changes must be made to the legislation to ensure both the service recipient and the service provider that the legislation is interpreted equally and that the purpose of BPA is maintained regardless of where in the country you live. The Løvemammaene believe this can be remedied with a clear regulation.
"BPA is overrepresented in the complaint statistics compared to municipal health and care services in general. Figures from the Norwegian Directorate of Health show that applications for BPA had the highest refusal rate among applications for municipal health and care services in 2019. The number of complaints about BPA decisions is also high compared to other municipal health and care services.
With this, the Løvemammaen questions how good the municipalities really are at exercising "discretion", when the complaint statistics are what they are. This tells us that there is a great need for a clear regulation.
In the patient and user ombudsman's annual report for 2019, the ombudsman writes the following:
"The cases the patient and user ombudsmen receive about the BPA scheme deal with both the refusal of the right to the BPA scheme and the extent of the number of hours. It concerns assessment of needs, questions related to being a supervisor and control of the number of hours. In several cases, we see that there are large gaps between the needs reported by the user and what the municipality considers to be sufficient.
Furthermore, the report finds that there is partially varying experience between the State Administrators with regard to whether and to what extent the municipalities learn from decisions in appeals and change future practice. Some municipalities do this to a large extent, while there are also examples of municipalities continuing their previous practice, even if it is criticized in appeal decisions from the State Administrator.
The report further finds that the patient and user ombudsmen link variation between municipalities' handling of BPA matters to cultural and attitudinal differences. It is pointed out that the broad "mandate" for the scheme given by the Storting creates challenges for the municipalities with regard to deciding what provides sufficient assistance to ensure equality.
Løvemammaene sees a need to clarify terms that the municipalities are currently allowed to interpret/use "reasonably". Terms such as "sufficient", "particularly burdensome care tasks", "extra care", "adequate care" - to name a few. It is consistent that the municipality knows better where the "shoe presses" than those who actually stand in these "shoes", namely relatives. In order to create equal treatment when BPA is to be awarded, the Løvemammaeneen believe that a clear regulation can help both to make the first decision better, but also make it easier for the State Administrator to make decisions in appeals, which results in equal treatment of BPA cases for the whole the country.
Assessment and case management
Organisation, case management and decisions when assessing and awarding BPA
The lion mothers are concerned about different organizational models in the municipalities. Responsibility for case investigation and service provision should be placed on the same organizational unit. We believe this is fundamental to ensuring understanding of BPA, providing professionally sound and equal services, regardless of which address you live at. The municipalities have too many variations and coincidences in how the need is met and this confirms what we are already seeing with our member families. We want a similar organizational model for the municipalities of residence to ensure that the case manager receives a greater overall assessment basis for the organization of the BPA service. The Løvemammaene also believe that the reasonableness requirement and the municipality's responsibility for making decisions is that case managers must see the family as a whole. Case managers must work interdisciplinary around our children and make decisions based on the annual cycle in which holidays, planning days and training hours are baked in.
The lion mothers are distraught and worried about complaints handling, cf. Patient and User Rights Act section 7-2 first paragraph second sentence. The way it works today and as described in the NOU, there are no clear guidelines for the municipalities. The lion mothers often experience that the same case manager who makes the service need/decision also deals with the complaint. If you submit a complaint about a decision that is unjustified or misjudged, you must get a new assessment by another practitioner to ensure proper services. This must happen before the complaint is sent to the State Administrator and will possibly result in fewer cases with the State Administrator.
The Løvemammaen believe that an upheld complaint with the State Administrator must be taken into account and an immediate change of the municipality's decision must be ordered. Something else weakens the legal security of these children and their families.
The BPA scheme leads to unfortunate differences between disabled people in different municipalities
The lion mothers believe that the concept of necessary services is very vague.
We believe that it will be important that we can read concepts such as "necessary, reasonable and optimal services" in a new and modern piece of legislation. Every person in need of assistance should be given the opportunity to live a life in which the CRPD, and for children and young people also the Convention on the Rights of the Child, is fulfilled. One should have the right to a scope of services that gives the person the opportunity for a good quality of life and, in cases where children are involved, the whole family should have the opportunity for a good quality of life.
Complaints processing
Long processing times for appeals challenge the legal certainty of service recipients.
The Løvemammaen believe that more control should be established on the follow-up of decisions by the State Administrator than is currently the case. Complaint decisions that are overturned by the State Administrator are not upheld by the municipalities, and there are no consequences for the municipalities when it is not followed up, but it does, on the other hand, have major consequences for the person who has complained about the decision.
Measuring out
Clarification of the right to be granted the scheme also for those who are not covered by the right
Løvemammaene believes it must be made clear that in the case investigation the municipality has assessed whether the need can be covered by BPA and that they have spoken to the person about this. The municipalities have a duty to provide information about the various offers they can give their residents, and then the municipalities must also assess the various alternatives. The Løvemammaen experience that our members sometimes find it difficult to argue in appeals when BPA is refused, as the case investigations and the municipality's assessments do not appear or are too poor. Often the decision is made that the municipality believes provides a sound offer without further elaboration as to why or which assessments are the basis.
Proposals for solutions to reduce the differences between the municipalities
The Løvemammaen agree with the committee that there are too great differences in measurement, scope of the service and what is emphasized if a citizen receives BPA. The Løvemammaen agree with the committee that clearer guidance from the central team can help to reduce these differences. But the Løvemammaene will also note that the allocation of services such as BPA must be aimed at the individual person and their needs.
The Lion Mothers experience through their help service and feedback from members, that the State Administrator often cancels the decisions due to insufficient case investigation and/or unjustified decisions. Nevertheless, appeals can be filed the system for several years before a comprehensive offer is put in place, because the State Administrator sends the case back to the municipality for new processing, which in turn gives a new refusal that must be appealed to the municipality, which in turn goes back to the State Administrator. It is an eternal round dance.
The Løvemammaen believe that the State Administrator must to a greater extent also assess the number of hours and make an independent assessment of the cases that come to them. Due to the disparities between the municipalities today, some families present major challenges.
In the media, there have been cases where families have to sleep in the hospital with their child because the municipality does not want to give hours to the night watch. In these cases, the decisions are often revoked by the State Administrator and sent back for new proceedings at the municipality. But this can still end in a new decision which must again be appealed to the State Administrator - and this can continue indefinitely. Legal certainty is non-existent! The Lion Mothers actually have members who, while waiting for the right help over several years, have only received a final decision on help in the mail after the child's death. Therefore, it is important that the State Administrator gives stronger guidelines in his decisions or decides on help himself. In this way, a number of decisions will be made which form the basis for aid and minor differences between the municipalities. We also want to be clear that if the State Administrator is to be able to be the body they are intended to be, then the municipalities must be required to listen to the State Administrator.
We support the committee's proposal that the State Administrator should have more equality in his complaints handling and that the solution could be an exchange of experience across the country.
Appropriate tools
The lion mothers find that many suppliers provide supervisors with good training and follow-up during the entire process of obtaining BPA. It is important that the municipalities here give citizens freedom of choice, so that both private and municipal BPA are offered. There is also a requirement in all the licenses that are granted to private suppliers that they must have training tools and arrange for BPA with various support functions for supervisors.
IPLOS as a mapping tool is not a tool that is able to capture all the different activities and the need for assistance during the day. This is because IPLOS only covers basic ADL and PADL and does not take into account activity, school, work and free time, and because supervision at night, the need for various medical technical aids, procedures with permanent employees etc. are not part of the scoring. IPLOS is designed for those who need basic health and care services with a need for point-by-point visits for certain tasks.
The lion mothers believe that other tools should be sought in mapping the need for BPA, than what is available today. It is largely up to how "good" parents/applicants are at putting the need in writing and making this visible in applications. A one-hour home visit, where the person is available and arrangements have been made for visits, often does not reflect the other 23 hours in the day. Good survey routines should be created that can help the case manager to understand the extent of the need for help and assistance, and what is extraordinary in relation to a functionally healthy child of the same age. Here, the survey form should also contain a separate chapter for scoring based on recommendations from professionals and/or doctors in the primary and specialist healthcare service, as well as how the various scores should be weighted in the assessment.
Competence
The Løvemammaen are behind the committee in that case managers should have expertise in the specialist area such as BPA.
The mother lions completely disagree with the committee that there should be no requirement for training of the case handlers.
The Løvemammaene believe that many would have avoided complaints if the municipal case handlers had had the right skills, training in legislation and guidelines, knowledge of guidance counselors and how to use them, as well as training in relatives' work and meeting people in crises. This is something that can be carried out digitally several times a year, e.g. in collaboration with interest organisations.
Resource-intensive health and care services
The Løvemammaen agree with the committee that the subsidy scheme for special resource-intensive health and care services be continued.
Free choice of organizational form
The lion mothers support free choice of organizational form. This is about user participation and equal treatment throughout the country.
Employment of close relatives
The lion mothers support the committee's decision to open up the possibility of employing close relatives when necessary. Here it is about having good routines as an employer. In some cases, there can also be long-term and good solutions. Many relatives want to help, but have reduced opportunities to do so if they are in other work. For example, grandparents, other family members or good friends of parents of children who have BPA can be assistants in the scheme. This can be relieving and safe for both the child and the parents, without the close ones exhausting themselves both by having another one hundred percent job and at the same time standing up for the family in question. We know that relatives are responsible for a large part of the health and care work in the country, often unpaid, and often this goes beyond their own work and health. By opening up the possibility of employing close relatives, you can help to limit part of this problem.
Supervision of the scheme
We agree with the committee that the state's health inspectorate must take the reports seriously, and introduce nationwide inspections.
The importance of the proposal for young children
The lion mothers support the committee's view on BPA for young children. We would like to highlight a few more important examples:
Even small babies need security, stimulation, play and cuddles. We know this can only be ensured by using BPA. These are the same people who are around the child, and who will get to know the child well.
Families with small babies may also want to go on holiday. Then it is absolutely crucial whether the family receives BPA or not in order to be able to bring the necessary assistance with them to be able to go on holiday.
Personal assistance from several assistants during the day and evening
The committee proposes that self-administered personal assistance should no longer be limited to specific needs for personal assistance from more than one assistant during the day and evening. This means that if a person partially needs assistance from one assistant and partially needs assistance from more than one assistant during the day and evening, the total number of hours for all assistants must be included in the assessment of the extent of the need. This is assumed to include a small number of people and a small number of hours for each individual. Revocation of this limitation is therefore not assumed to have significant cost effects. The lion mothers support this.
Coercion and power
The lion mothers are concerned about the use of coercion against children in daycare and school. Here there is little/no legal certainty and to avoid emergency situations and the unnecessary use of coercion, it is crucial that measures are initiated and sufficient resources are provided. State administrators must more clearly follow up on individual reports and ensure that measures are evaluated. We also want more attention to be directed at service providers as opposed to individual reports in connection with prompting and demands that the specialist health service actively intervenes and guides the staff. Unfortunately, the lion mothers receive inquiries from families where children are put on the ground, grabbed/held tightly or are locked in a room as punishment. Lack of routines and expertise could result in own practice and a single message that disappears in the system. It is also crucial that an IP is initiated, early intervention and a focus on prevention for our children. Interdisciplinary collaboration with all agencies involved is essential to ensure the legal security of our children.
Funding and cost of BPA
The ministry explains the current funding of BPA. The lion mothers support the ministry's description of BPA as a cost-effective form of service production. The lion mothers will also clarify that when assessing whether BPA has been added to a level that is cost-neutral for the municipalities, then one must also look at BPA against the total costs incurred in a family with a disabled and/or sick child. Time and time again we see the consequences, i.e. the costs, that irresponsible services run with: poorer health due to great strain and crisis in the family over time, high absenteeism from work, sick leave, disability benefits and families with extensive wear and tear injuries. These are also costs that both the state and the municipality have to deal with, and which are considerably higher in the long term than what good and proper health services cost the municipality.
The ministries point out in point 8.4 that the sustainability of the Norwegian welfare model depends in the long term on public revenues being strengthened and expenditure growth being moderated. Increased employment, education and a more efficient public sector are highlighted as important measures. The ministry highlights BPA as an important equality tool, and it is good that the focus is on BPA towards inclusive working life. The Lion Mothers will nevertheless clarify that health care must also be included in BPA if one is to succeed in giving the people the prerequisites and opportunities to be active participants in their own lives in a socio-economic and sustainable way. The Løvemammaene believe that the ministry here must see the value of BPA as both an equality tool, but also health care, both in terms of quality of life, development, education, working life, and not least public health.
Salary and working conditions/working environment for BPA assistants
Labor law rules
The lion mothers believe that all assistants employed in BPA schemes should be employed as employees, and not that assignment agreements should be drawn up for the individual assistant. This is because we see it as very important that an employee in a BPA scheme is looked after as an employee with the benefits that come with it, including the Working Environment Act, the Holidays Act and the National Insurance Act. Both the service recipient and the municipality/private provider have a responsibility to ensure that legislation and agreements are followed, including salary payments, pensions, holiday pay, contracts, training of assistants, etc. At Løvemammaene, we see this as a minimum in accordance with looking after the individual employee.
In large schemes where there are many decision hours, the day-to-day operations will be comparable to a medium-sized company. It is then important that the actor responsible for operating the BPA scheme is capable of operating responsibly, including the municipality or private actors, so that everyone's interests are safeguarded in the best possible way and in accordance with current legislation.
The right to a fully responsible working environment
The Løvemammaen are concerned that BPA assistants, like all other employees, should have a good and safe working environment. We would like to remind you that several of the factors to be able to ensure a good working environment are in the hands of the municipality and NAV, e.g. large enough space to be able to maintain a good working environment. We have several members who have experience of being refused by the housing office and the Housing Bank both for support for the purchase of a larger home and/or development/facilitation of an existing home. A family in need of BPA cannot be charged financial costs to ensure the assistants' working environment. Here the municipality must take responsibility and ensure that the workplace is physically adapted to be able to have employees there. We also experience great variations in getting the right aids such as wheelchairs (manual and electric), personal lifts/lifts, stairlifts, ramps etc. where NAV does not take into account assistants' working environment.
In order for the physical and psychological working environment to be secured, it is very important to put in place a national supervisor that all service providers (municipality, private supplier or own company) must adopt so that supervisors can protect the assistants' physical and psychological working environment. Here it is also important that the employer stays up-to-date and ensures that measures are put in place when necessary. By measures, we mean to cover good work chairs/armchairs, easily accessible tools such as PC, printer, and digital systems for time reporting and form making. Regarding the latter, Løvemammaene would like to emphasize that "Tamigo", which is used by many suppliers, is not suitable for the visually impaired. Other measures can be employee interviews, collaboration meetings and refreshing the supervisor's role, as well as courses and support in connection with acute incidents and deaths.
Relief in BPA
The lion mothers agree with the committee's proposal that relief can be part of BPA, and that this can be an alternative form of relief inside and outside the home.
The lion mothers believe that BPA in some cases gives greater freedom of choice where relief can be done through a BPA scheme. Several of our members have good experiences with this. But it is important that some children have an additional need for nurturing and care that is so great that the families need relief in housing. It is important that the form of relief is done in consultation with the individual family and its needs. Because the children have the right to be with their parents, but the parents also need relief in order to cope with the need for care over time.
The need is not continuous
The right to BPA as it currently exists requires continuous need and that the municipal service cannot cover this with occasional visits and the need for more than one assistant should not be calculated in the current calculation of whether one has rights to BPA.
The lion mothers believe that all hours should be counted if you need one or more assistants present to help a person. If you need more than one assistant present, most people have such an extensive need for help that, with the current regulations, they have enough hours in their need for assistance to be entitled to BPA. The lion mothers believe that this part can be removed from the regulations, and that all hours are included in the basis if one or more assistants must be present.
The lion mothers support the committee's view that the BPA regulations today appear to be complicated and unclear and the requirement to only count one assistant regardless of the number of employees at work can be removed.
The Lion Mothers believe that many people are isolated by occasional visits, where they only get their basic needs met such as food, care and medicine. They spend almost all their waking hours inside their apartment, as they need help to get out and be social.
The Løvemammaen believe that everyone should have the right to fresh air every day (in Norwegian prisons today, it is a legal right that all prisoners should have an hour of fresh air every day) while many people are not outside the door for several months due to sporadic visits from the municipalities. BPA is an equality tool, and it is important that all people in Norway also have the opportunity to be social outside the home. Where the municipalities believe occasional visits are enough, not all people get the opportunity to participate in social arenas and participate in cultural life etc. By removing the lower hourly rate, the total number of hours per month will make it possible to be social.
The Lion Mothers believe it is important that BPA is also seen in connection with other municipal services, as some of our members have. Some have occasional visits from the municipality for parts of the day or a few days in relief housing per month, and a "pot" of BPA hours that covers the rest. For some, this is a good solution, while others are locked into their homes, as the municipality is less flexible than a BPA scheme, where the point-by-point assistance must be carried out. In many cases, the lion mothers experience that the municipalities themselves override doctors' reports that state that the child needs continuous supervision at night, creating extra burden for parents who try to work during the day. Behind this lies an assumption that children often wake up at night and that this is normal. When a child has one or more illnesses that cause several periods of wakefulness at night, and this happens every night, this is not "normal". For relatives' health, being at work can be very important, in order to be able to cope with a burdensome lifelong care task, where the course is often palliative or approaching the terminal phase.
Age limit
Although there is no lower age limit for the right to BPA, there are many municipalities that still do not give BPA to young children. BPA is a great way to organize services around families with children of all ages, which we thoroughly review in this consultation input.
In today's society, the population is expected to live longer and to work longer, and then the need for assistance will also be present at an older age. The lion mothers believe that the age limit must be raised. A consequence of this will be that the Storting will subsequently have to look at the subsidy schemes for particularly resource-intensive health and care services in light of a change to this age limit. The lion mothers believe that we cannot wait to raise the age limit to get BPA because the subsidy scheme is not in place.
Regulation
The Løvemammaene support the introduction of a regulation on BPA which will collectively and holistically regulate key aspects related to the scheme.
A separate regulation is completely in line with what the Lion Mothers believe is absolutely necessary to better secure the right, increase understanding in all municipalities about what BPA actually is and ensure clear guidelines.
Below is NOU's proposal for its own BPA regulation with Løvemammaene's crossing out of what we believe must be removed and Løvemammaene's proposal for changes:
You can download the document with Løvemammaene's proposal for regulations on BPA if you are unable to read it directly in the viewing window below here.
End
The lion mothers are happy that the BPA scheme is finally being prioritized and will be improved. The NOU contains a lot of good things that the Løvemammaene support wholeheartedly. However, we are very disappointed that the committee excludes people living with illnesses from a scheme the committee itself chooses to call an "equality tool". NOU's proposal for a new and improved BPA scheme cannot be called an equality tool as it is presented as of today.
We repeat ourselves: A BPA scheme that does not include the right to healthcare cannot be called an equality tool either! As we have clearly expressed repeatedly in the past and now at the beginning of this consultation input, we in Løvemammaene fear the consequences if health care is omitted from the scheme. The committee's proposals, both the majority and the minority, are life-threatening for our children and their families. With this proposal, many of our member families will fall back into a life of isolation and possible life-threatening situations for their children, and/or never have the opportunity to live free and equal lives.
William, aged 11, who has a severe muscle disease and a tracheostomy with a ventilator, had never been able to hold a choke tube at the zoo, experience speed and excitement on carousels and quad bikes, or visit his family in Sweden without BPA with health care.
Edvan, 12 years old, who has Down syndrome, complex medical challenges and intravenous nutrition, had never been able to be with his family at the cabin or visit his older sister who studies in another city without BPA with health care.
Six-year-old Novalie, who has a rare neurological disease and will die as a child, would never have experienced the fun at Tusenfryd, a picnic in the park or a summer holiday in Gurvika with her family without BPA with health care.
Lea, aged 4, who has a rare syndrome, severe epilepsy and intravenous nutrition, had never been allowed to cheer on her older sisters when they play handball, go on a family stay at Frambu or travel to Denmark on summer holidays with the family without BPA with health care.
4-year-old Vegard, who has a complex medical illness with a baclofen pump and intravenous nutrition, would never have been able to live at home with his parents and sisters if he had not had BPA with health care.
Our children and young people are first and foremost children and young people with the same basic needs, different personalities and interests, hopes and dreams for the future as all other children. How will the next Ingvild Kjerkol be able to become health minister if she does not get the hours and the health care she needs to have a good upbringing, complete studies and stand on the list for the municipal elections?
The lion mothers conclude with the following:
- Health care must become a right in BPA
- The child and family perspective must be included in the regulations on BPA
- BPA in kindergarten, school and studies must be covered by the court
- Good salary and working conditions for the assistants
- Legal certainty in complaints must be strengthened
- Operating budget
With best regards
The lion mothers
- SUBJECTS: Current affairs, BPA, Hearing, Input, Interest political work, Our work
- Published:
- The lion mothers
- SUBJECTS: Current affairs, BPA, Hearing, Input, Interest political work, Our work
- Published:
- The lion mothers
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