132 ME parents responds to Legal Hearing on Carer’s Allowance System!

The Norwegian government has held a legal hearing regarding the welfare-system that grants parents of sick children benefits equalling their full salary, while they have to stay at home to care for their children, carer’s allowance. Unfortunately, this type of benefit has been difficult to get for parents of children with ME. Now this may change.

The proposed new criterion is that the child due to illness, injury or defect documented need for continuous care and attention and the carer therefore has to be away from work. This is an important alteration of the existing criterion of life-threatening or severe illness. Children with long-term illness is now suggested to be included.

The government also suggests

  • to simplify the now complicated regulations
  • to extend the upper age limit to 18 years (but no one will get carer’s allowance longer than the age of 18)
  • to provide carer’s allowance of up to 100 per cent income compensation in 260 days (one year) and 66 per cent compensation in 1040 days (four years)
  • to make it possible to use the proposed frame over several years by receiving a lower percentage (counting days)
  • to increase flexibility by allowing part time work and staying at home down to 20 %. One day of 20 % work will however count a full day of the total frame
    to remove the seven quarantine days (“§9-10 cases»).
  • that both parents should be able to receive carer’s allowance at the same time (also for “§9/10 cases”), but the total fashioned frame is consumed twice as fast if both use such days at the same time
Det syke barn, Edvard Munch 1896
The sick child, Edvard Munch 1896

The proposed amendment may substantially improve the situation for many children and adolescents with ME.
132 ME-parents therefore sent a common response when the system of carer’s allowance was on hearing, with a deadline 12/15/2015. In essence, we support the Government’s proposal.

However, we see a number of challenges, including:

  • The proposal requires a specialist (hospital?) to write certificates and applications for carer’s allowance. But ME-sick children and adolescents are generally followed by the GP or a pediatrician outside hospitals. Also setting a diagnosis often takes place outside the hospital. In addition, most hospitals reject children who already have a diagnosis. Hospitalization is also a great burden for ME sufferers, and is best to be avoided.
  • It often takes a long time to come to see a paediatrician, but the child still needs continuous care and attention while waiting. Who is to fill in the application for care benefits during this period?
  • We see it as unreasonable that the Social Welfare office (NAV) disregard assessments made by the child’s physician. This system also results in great uncertainty, as the family doesn’t know if carer’s allowance will be granted.
  • ME sufferers are often ill for more than five years, and will need supervision and care beyond the limited period government now proposes.

We therefore proposed the following amendements:

  • The doctor who follows the child the closest should write all medical certificates regarding care benefit applications, at least for children/adolescents with ME. This doctor knows the patient well and hopefully will have close contact with him/her, often through home visits etc. For ME sufferers, this doctor will usually be the GP.
  • The child’s physician should also determine the care benefits percentage needed for taking care of the child, based on the child’s condition and in dialogue with the child’s caregivers/the person who will stay at home.
  • Both GPs and specialists should be trusted in the same way as when they confirm sick leave for adults. When the doctor recommends care benefits, the family should be able to assume that it will be granted.
  • The doctor’s employment status should be insignificant. Hospitalization is usually not good for ME sufferers, they are not automatically referred to a specialist at a hospital and very few are followed by specialists.
  • Relatives must be able to maintain a prudent economic livelihood throughout the course of the disease, either by care benefits, by sufficiently high municipal benefits (these are way too low) or enough help and assistance that are tailored to the specific challenges of ME sufferers. The latter is very difficult, so the primary solution should be to ensure a prudent economic livelihood for close relatives.
  • In special cases it should be considered to expand the care benefit period of more than five years.

We have also requested that the regulations is generally designed so that they meet the needs of children and adolescents with ME, and not the contrary incur additional charges that could make them worse.

Read our full response to the hearing (in Norwegian, use Google translate).

We thank the Norwegian ME Association for kindly allowing us to use parts of their response to the hearing (in Norwegian).

Related posts on The ME Parents.no (in Norwegian, use Googel translate): Pleiepenger: Lik praksis for alle må ikke innebære en innstramming
Pleiepenger og saks- og klagebehandlingstid fra Nav
Pleiepengerettigheter for foreldre til barn og unge med ME

All responses to the hearing are available on the Governments web site.

By the ME Parents

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