Letter about "a more generous care allowance scheme"

The lion mothers have sent letters to the Conservative Party, the Progressive Party, the Liberal Party, the Red Party, the Green Party, the Christian People's Party and Patient Focus to explain why the representative proposal from the Socialist Left Party on "a more generous care allowance scheme" is so important for those concerned. Read the letter in its entirety below.

We learn that the current government is unable to see the necessity and utility of the representatives' proposal for a more generous care allowance scheme, and therefore want to make you aware of how important this is for the few it concerns. We are writing to you in the hope that you can and will make a difference through your 'ballot'. 

The care allowance scheme is vital for families with the very sickest children, so that they can get their everyday life going and so that the children can be looked after, and have as good and safe a childhood as possible. We are therefore happy that the scheme is as it is now, but at the same time believe that it has potential for improvement when it comes to looking after parents somewhat better. The system today looks after the child in question and ensures that parents do not burn themselves out by having to work 300 % a month. Receiving childcare allowance means that you as a parent carry out continuous supervision and care for your child. It is the only social security scheme that requires such a degree of extreme work effort. For some until the child gets better or stable enough to be able to return to working life, and for some until the child dies. We therefore believe that it is important to improve the parents' situation as far as possible, which you can help to do by supporting these proposals.

Proposal 1 deals with parents being able to retain community participation, local connections and community engagement, e.g. through positions in sports teams, local politics, organizational work and the like. Many families have more than one child and as a mother or father you are often involved as a football coach or referee in the swimming club for healthy siblings. For some, getting involved in local politics can be valuable, preferably with a place on the board of the party's local team. While for others positions in working life and interest organizations give meaning in an otherwise demanding everyday life. Many hours of hard work with the sports team, at group meetings with the local team, as well as consultation input, political letters and information work, have been done on top of having a child in need of care. This gives parents the opportunity to mean something and not lose themselves in a different and demanding everyday life. After all, it is the children who are sick - not the parents. We find it strange that one should not be able to receive a small fee or meeting allowance for the engagement. We believe that it should be possible to introduce an income limit corresponding to the income limit in the disability benefit scheme, where there is a ceiling of 0.4 G before the disability benefit is cut short. We are fully aware that your income has already been adjusted down to 66 %, but the big difference between disability benefit recipients and care allowance recipients is precisely that those who receive care allowance are not sick themselves, and are therefore not limited in providing a certain amount of commitment when you have possibility for it. If you are in ordinary work, you can work extra, get involved as much as you can, yes - even get yourself an extra job if that's the case. All of this is taken away from you the day you have a child so sick that you have to switch to care allowance. There is no salary increase (unless you are in and out of the scheme), and you are not allowed to take out a mortgage, as care allowance is compared to sickness allowance - an unstable income. For many, holiday pay and pensions are also hard to come by. By supporting the proposal, parents will be able to maintain some contact with local communities and involvement through other networks that give meaning in an otherwise difficult everyday life, which we consider to be a public health measure. At the same time, the parents can receive a modest fee or allowance, which will be good for keeping an eye on the family finances. 

Proposal 2 deals with the right to receive care allowance for three months after the child's death. Let's be honest, there is no difference between the grief of losing a child after 3 years and 2 days, or 2 years and 345 days. Do not accept grief discrimination.

As the system is today, parents who manage to work part-time or full-time for periods throughout the child's life are punished. You must have received full care allowance for at least three years to be entitled to care allowance for three months after the child's death. If, after all, you manage to work, you are only entitled to care allowance for six weeks. This makes no sense. 

Another aspect of the current arrangement that does not make sense is the arbitrary and artificial limit set by six weeks and three months. Brenna's argument is that parents who have received care allowance for more than three years may need more time to return to working life because the length of the period they have been outside. Our experience is that parents are as different as the parties in the Storting, and return to working life at different times after the child's death, regardless of how long they received care allowance beforehand. What we do know about the time after death, and which research supports, is that the risk of complicated grief increases if the circumstances surrounding the death are difficult, traumatic and lack care. And there are already enough horrors to deal with in the immediate period after the death of a child, such as writing an obituary, planning a funeral, receiving a letter from NAV stating that child benefit is ending without so much as a condolence, all agencies to be informed, all aids and medical equipment to be delivered or collected. The list is long and painful. If, in addition, one has to go to the GP to defend the need for a sick note with subsequent incorrect psychiatric diagnosis entered in the medical record, then it is an additional and unnecessary burden that can be avoided by having the right to nursing allowance in any case during a transitional phase for three months . 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 that 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, as sickness allowance. In that sense, the state does not save a penny by failing to make the transitional arrangement equal.

For parties that are concerned with connection to working life, this is therefore a proposal that is right to support. 

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 prior to death. Some of these get back to work quickly, others not. We are therefore talking about plus or minus a hundred parents. As if the state budget is overturning.

We are happy to arrange a meeting or a telephone conversation if you would like to hear more about our views and experiences. 

There you can read our consultation input: https://www.stortinget.no/no/Saker-og-publikasjoner/Saker/Sak/?p=97195

With best regards

The lion mothers