Consultation input for a more generous care allowance scheme 

The Løvemammaen have submitted written consultation input to the representative's proposal for a more generous care allowance scheme.

SV has put forward the following proposals:

1. The Storting asks the government to put forward a proposal to increase the income limit for people who receive care allowance, before care allowance is cut, to correspond to the current income limit for the disabled, which is currently 0.4 G. The income limit applies to each calendar year and is adjusted based on changes in the national insurance basic amount.

2. The Storting asks the government to put forward a proposal to amend the law so that everyone who receives care allowance in cases where the child dies can keep the care allowance for up to three months, regardless of how long the person has received care allowance, instead of individuals only being allowed to keep care allowance for up to 30 benefit days like today.

Below you can read the input in its entirety.

Consultation input to representatives' proposals for a more generous care allowance scheme 

Løvemammaene is a diagnosis-independent organization that works to inform about and improve the rights of children and young people with illness and functional variation. We are passionate about support, freedom and equality for the whole family. The organization is growing and has 7,869 members as of 31.01.24. 

Increase the income limit for people who receive care allowance 

The introduction of an income limit in the care allowance scheme corresponding to the income limit for disability benefit of 0.4 G (per 2024: NOK 47,448) is a reasonable and correct change to improve the lives of families with seriously ill children and young people. 

Care allowance differs significantly from all other social security schemes. The biggest difference is that carers who receive care allowance are not disabled. At the same time, one of the conditions for the right to care allowance is that you carry out continuous supervision and care. The care allowance scheme is the only social security scheme that requires you to work full working days (or night shifts) for the social security you receive. This job is carried out without breaks, without evening and night supplements, without overtime pay, without holidays, with a poorer pension and without occupational injury insurance, and there is also no one from the Norwegian Labor Inspection Authority knocking on our door when we have worked 267 days straight. Thus, the care allowance scheme cannot be compared with other social security schemes, which imply that you are unable to work yourself or which do not set the same requirements for continuous supervision or the performance of particularly burdensome work.  

By increasing the income limit, parents who receive care allowance can do something in addition to being "the parent of a sick child", if they can and bear it. Maintaining contact with the local community, contributing when possible, experiencing participation and solidarity with others when you have temporarily "lost" all colleagues in your regular job, will be of great importance to many of these parents. It must be possible to take up a position in an interest organization or in local politics, get involved in life-view societies and volunteering, or assist as a football coach for the team of the sick child's sibling, even if you have a child who makes it difficult or impossible to stand in ordinary work. As the regulations are now, you can't even receive a fee for a lecture or sell products you've been working on at home on the sofa in the evenings, without it being reported as income. If you did not have a sick child that requires continuous supervision and care, you would be able to maintain and participate in remunerated activities and positions in your free time - in addition to work - without being deducted from your salary for this by your employer. The Storting must help to prevent total isolation and enable some social participation and involvement for those carers who have the opportunity to do so.  

It is also advantageous for many of these families to be able to receive a small extra income. Although we certainly have good welfare schemes in Norway, it is expensive to have sick children. For example, there are many costs in connection with insurance of a NAV car, which you would otherwise never have needed, and therefore also higher expenses for fuel due to that you cannot take public transport and/or must have two cars. There is also talk of higher electricity costs due to devices and aids, bring a companion with you, and higher expenses for rent/loans because many need more space and adapted housing (stair-free, roof lift, large aids, assistants, medical equipment, consumables, etc.). Many carers who receive care allowance are also unable to take out loans, or choose partial payment solutions. The reason is that banks and loan providers classify care allowance as sickness allowance - an insecure income. In addition, there are several carer's allowance recipients who are at rest for several years when it comes to wage growth, either because they have lost their job during the carer's allowance period or do not have the opportunity to go back to work to get a new income calculation. Overall, this puts some families in a difficult situation, where, on top of losing contact with working life, they also lose contact with the local community or other socially beneficial involvement, and are constantly lagging behind in terms of wage and price growth, and in no way have the opportunity to to bring in some extra income.  

Care allowance after the death of a child. 

Losing a child is one of the strongest stresses a person can experience. Grieving for the child also has serious health consequences for the grieving parents. Nevertheless, we have regulations that discriminate between parents who lose their child due to illness. 

Current regulations for care allowance: 

"As a general rule, you can receive care allowance for up to 30 days (6 weeks) if the child dies while you are receiving care allowance. When you have received 100 per cent care allowance for at least three years, you can receive care allowance for up to three months after the child's death (12 weeks). It is a prerequisite that you have had 100 per cent care allowance continuously for the three years. Coherent means that there has been no break between different periods. If you have had one or more periods of graduated care allowance during the three years, you can receive care allowance for up to 30 days (6 weeks). For example, if you have had 50 per cent care allowance for at least three years or more, you will receive care allowance for 30 days after the death." 

Current regulations draw an artificial dividing line in rights between losing a child after three full years of 100 per cent care allowance, and having had one or more periods of grading care allowance, or sharing 100 per cent care allowance between the parents. There is also an artificial dividing line between parents who lose their child after three full years on care allowance, and parents who have a shorter time on care allowance, i.e. less than three years. 

The argument we often see used when it comes to this distinction of three years is that those who have been out of work for more than three years will need more time to readjust and return to work after the death of their child, compared to those who have worked somewhat during the period with care allowance, i.e. had graduated care allowance. This, as we see it, is completely wrong. Because having had graded care allowance for a period does not mean that you have worked as normal and have regular contact with the workplace, you also get grading of care allowance if you have only worked two hours a month.  

Coming to work and doing small tasks during periods when you can and have the opportunity can be positive for parents who are in demanding situations with seriously ill children. The few hours you have worked then lead to graduated care allowance, and halving the period of care allowance following the child's death. This does not necessarily make the way back to work easier, as it will not be easier to readjust after the child's death because you have worked a few hours or days during a three-year period. Rather, the regulations lead to these parents not working the few hours they could work, because this will result in a halving of the period you receive afterwards, which most people will consider not worth it. This is negative both for society, but also for the parents' mental health.  

In practice, the regulations distinguish between parents who may be in very long-term and unstable illness situations, where there are some more stable periods where parents can and want to participate somewhat in working life. A distinction is also made between parents who may have had healthy children who develop an acute illness lasting a few months, or children with complex problems where the parents have not needed 100 per cent care money, but who go in and out of more acute and short-term progressive conditions where the child eventually dies. Such a rapid deterioration of the child's condition will in every way be drastic for a family, and it is incomprehensible that they should only be able to have 6 weeks (30 days) of care allowance following the child's death.  

In a written question regarding the regulations around care allowance and the time after death put to former Minister of Employment and Inclusion Marte Mjøs Persen, she points out in the last paragraph that parents who lose their child can receive sick leave for a year after the care allowance expires, if they are unable to return to working life. This is in contrast to the recommendations in the sick reporting guide, where it is encouraged to avoid sick reporting if it is justifiable, where full and prolonged sick reporting is discouraged, and it is encouraged to organize work rather than sick reporting.  

In a period of sick leave, the person on sick leave must meet regularly for an interview with the GP, efforts must be made to arrange for the person on sick leave to return to work partially or with other work tasks. It is not such a race that the mourner needs. The grieving person needs calmness and assistance to process the grief. It is also the case that if parents are to switch to sick leave, they must make an appointment and meet with the GP, and be sure that the employer submits a new income report to NAV. The last thing you need in the middle of life's biggest crisis is more forms and more bureaucracy. An automatic system in which care money runs for a few more weeks or months, until the parents have got through the process after death, funeral and more, and are possibly ready to go back to work, will be less of a worry and save money for those concerned.  

Another argument used by Mjøs Persen is that parents who lose their children suddenly, such as in an accident, are not covered by the care allowance scheme and will therefore not receive a period of care allowance afterwards. We believe that these parents must be included when we talk about mourning. 

The relationship between care allowance and bereavement notification 

From today's newer and updated research on which work is built within the bereavement support field, we know that parents who lose children have an increased risk of their own mortality, which for mothers persists throughout their lifetime, while for fathers it decreases after some time. Bereaved are more prone to physical health problems, especially recently after a loss. But bereavement in itself is not considered a reason for sick leave and does not entitle you to sick pay.  

Grief is not a disease, but the grief reactions can make you unable to work for a period. An arrangement is needed that acknowledges the grief, this is where the bereavement message comes in:  

• The bereavement report will be able to frame what the current sick report supplements for parents who lose their child.  
• Bereavement notices can be given to parents who lose their child suddenly and unexpectedly, and to parents who have received care allowance.  
• Bereavement notification must work as the care money scheme does today, with 100 per cent income compensation.  
• Bereavement notice must be given for three months as an ordinary benefit, and must also have the possibility of an extension of three months for parents who, according to assessment, need further bereavement leave, and where grief reactions are the dominant factor in the parents' degree of incapacity for work.  

However, we would like to point out that a bereavement notice does not, in any case, replace the need for care allowance in a transitional phase after the child's death. Unless the public authorities manage to create a bereavement notification scheme devoid of bureaucratic processes, which interacts across the health service and NAV and bears the hallmarks of a high degree of automated solutions, and which saves parents attendance, extra work and form management, then the need for care money in a transition be absolutely necessary. Both in terms of experience and knowledge, we only have to point out that our confidence that such a solution will be in place in the near future is very small. You only have to look at the most recent political flop: the children's coordinator scheme.  

For years, parliamentary representatives from both the right and the left have argued that "in the past, the scheme for care allowance after the death of a child was not good enough, now it has been strengthened", as if it defends the bereavement discrimination in the current care allowance scheme. What was the case seven years ago (in the old care money scheme before 2017) is irrelevant and in no way helps parents who lose their children today. This is a completely pointless argument that can only be rejected. We can promise the representatives of the Storting who still doubt this reasoning, that if there is one thing parents who have just lost their child do not think about, it is what happened before 2017.  

There is also no one who disagrees that the care allowance scheme was strengthened in 2019. The problem is that the strengthening was arbitrary and that the scheme is therefore now discriminatory against bereavement, solely based on an argumentation that is unfounded. There is no difference between bereavement and the time after for parents who lose their children, whether they have received care allowance for 3 months or 3 years. The right to care allowance after the death of a child must be the same for everyone who received care allowance before the child's death. The expenses in this connection will, if the Storting does not support equal rights to care allowance for three months after the child's death, in any case just fall under another budget item, for example sickness allowance. In that sense, the state does not save a penny by failing to make the transitional arrangement equal.

The number of children and young people under the age of 18 who die each year is fairly stable. Of these, some are accidents, some suicides, some SIDS, some drug-related, some murders and some so-called other external factors. The rest are deaths in the newborn period, congenital diseases and malformations, cancer and progressive disorders. So not everyone falls under the care allowance scheme in the first place. In the absence of more recent figures and because the number of children under the age of 18 who die annually is fairly stable from year to year, we are starting from the latest available figures from 2017. Figures from NAV show that 126 children died in 2017 whose parents had received care allowance in the run-up to death. Some of these get back to work quickly, others not. So you (parliamentary politicians) are arguing about plus or minus a hundred parents. As if the state budget is overturning. It's so embarrassing it hurts. Or as Storting representative Mímir Kristjánsson stated to Nettavisen last year: "- Even if you could save some money on this scheme, how damned crazy a country are we supposed to be?" 

If there is one issue the parties in the Storting should be able to agree on regardless of party affiliation, it is this one.  

The lion mothers support the representative proposal in its entirety. 

With best regards

The lion mothers