Here's a thing. I complain about our NHS (National Health Service) from time to time, but I am so thankful that it exists. I know that, if I fall ill, I will be given treatment. If my girls need medication it will be prescribed for them, and I will not have to pay for it. When Mog's feed needs change, her special formula can be changed, and all it takes is a call to the dietician.
Still equipment related, but not NHS based, I can use the girls' Disability Living Allowances to pay for our van. I could, if I wished, have a new van every three years, and if my income was low enough, I could get a grant to cover the costs of the adaptations. We have chosen not to do that, but these are all options available to us.
I don't want to get into an argument over which system is best, ours, or the US insurance based system with Medicaid for those who are deemed to be truly in need. I have however over the past few years been truly shocked to learn what basic things Medicaid does not cover. I didn't know, for example, that it is not possible to get medications through Medicaid once they have been made available over the counter. Perhaps a bottle of children's ibuprofen is fairly cheap. But if your child takes it several times a day then one bottle doesn't last very long. And when you also have to buy a bottle of paracetamol every couple of days, and when your son has multiple allergies and is tube fed, so only certain brands will do, that soon mounts up.
Now imagine that your child has a tracheostomy, and requires oxygen to be bled into his lungs via the tracheostomy all day long. The trach is connected to an oxygen concentrato via a length of corrugated tubing. This tubing must be changed every three days, in order to reduce infection risk to an already vulnerable child. The insurance company will only provide enough tubing for it to be replaced once per month.
Imagine that your child has a tracheostomy, that your child has to breathe through a hole in his throat. There are some highly specialised pieces of kit which sit in that hole, keeping the hole open, keeping the airway open, and allowing the oxygen from the concentrator to reach the lungs. These pieces of plastic, the tracheostomy tubes, need replacing every week to ensure they don't harbour infections. The insurance company will only provide two per month.
For my friend Trina and her son Jophie, this isn't an imaginary exercise, this is the reality of their daily life. Jophie is a boy who has had far more than his fair share of issues over his lifetime. Trina is a dedicated parent who spends her life keeping her son alive. And in the minutes she has left over from meeting all his medical needs, she has to try to argue with insurance companies, and somehow find the money to keep buying the supplies he cannot live without.
Jophie is colonised with several different super-bugs. He cannot reuse disposable equipment without serious risk to his life - when this has been tried, he has become seriously unwell extremely quickly and ended up back in hospital in PICU. Reusing sterilised trach tubes caused an ulcer which nearly ate through to his oesophagus, another potentially fatal problem.
Now they have a new problem. Jophie is no longer able to sit in their current vehicle. He cannot sit up for any length of time and needs to travel lying down. Their present vehicle is too small to fit him lying down, a nurse to keep him safe, his wheelchair without which he cannot move at the other end of his journey, and all his other equipment. Additionally the vehicle is old, and starting to have problems which come with old age, meaning that even if Jophie is at home with a nurse, Trina is unable to drive far, in case she breaks down and is unable to get back to him.
These are just a few of the things which Medicaid does not cover, and which Trina is struggling to provide for her beloved son. Trina and her friends have worked hard over the past year trying to find ways of raising money for Jophie's needs, and they have finally come up with this:
This is more than just a cook book. This is a chance to ensure that Jophie gets the things he so desperately needs. Please consider placing an order.
You can find more information about Jophie and Trina both at the Meals 4 Wheels website and at Trina's blog - Jophie's Jungle.