In Turkey we have a serious problem with the insurance system of disabled persons. Government doesn’t cover any nurse expense at home. So we found our own nurses and paying them 50 USD for 12 hours. The nurse finishes her work till I come back from work at 20:00 and I take my turn till 03:00 to look after Sarp. Weekends I don’t ask nurse...

What about the system in you country? Government/insurance system contributes to nurse at home?  

Bihter

Hello Bihter

In the USA it all depends on your private insurance plan benefits.  Some may cover nursing for 24, 18, 12, etc hours per day.  Then there are insurance plans that give you only so many days of nursing per year.  I think most state funded programs are the same.  Basically it's a battle whatever you have.  I personally have 2 days per week nursing for Nicholas, and I'm always fighting for more.  Good luck!! Always happy to help with any questions you might have.

Brenda

Hi Brenda,

I thought that the government is providing nurse for you. Is that the private insurance?

Anyway, we do not have nurse coverage in our private insurance system :(((

By the way the private insurance company does not know my son's diagnosis, if they know that he is Canavan, they will immediately stop the insurance. So I d not want to use my real name in forums in case they can find something and understand the situation.....

I think your insurance system cover the genetic disorders? Very nice...

Hi

In the UK we get 7 days a weeks 10 hours a day with a care assistant, not a qualified nurse, this is the time of day my husband is away at work as I also have 2 smaller children to look after and can't do it all alone as Ben is at home all day and does not go to school for more than 2 hours a week.  But it depends whether you fall under social services or NHS funding and who does your assessment as to what you get.  Ben has NHS continuing care funding.  I am sorry to hear that things are not so good in your country you must be exhausted.

Take care

Sally x

i think our insurance would cover some nursing care but cant be home if theyre here.  i watch her and do all her care and take care of  her younger sister.