Parker’s doctor suggested that we change out Parker’s trachs at least every two months, with every month being optimal.
I explained to him that our insurance gave us great grief when trying to procure even one new trach a month.
Parker’s doctor thought for a moment and then commented that since a trach is basically just a molded piece of plastic, they might not be too much to simply pay for out of pocket.
Except they are.
Our home health care company charges our insurance company (these two companies are owned by the same parent company, btw) $200.00 per trach.
I had no idea a human jaw could fall so far so fast.
Parker’s doctor was sincerely stunned to discover what the cost of a trach was.
Because there is simply no way we can pay that amount of cash out of pocket for pieces of plastic each month I turned to what I call The Special Needs Underground.
The SNU is comprised of parents who are looking for medical supplies and parents who have medical supplies they no longer need.
Many times after a kid has had his pull down surgery performed, he is left with ostomy supplies he no longer needs. Another may have a daughter who was recently decannulated and has trach supplies in need of a new home.
Some parents offer up their no longer needed supplies for the cost of shipping only. Some sell their supplies for way less than it would cost to purchase them new.
It’s a win-win all the way around.
Supplies get used, a weight is taken off of Medicaid and private insurance companies. Money is saved and the sighs of relief are often audible….even across the country.
One of my goals is to set up a Special Needs Underground here in Utah. A data base of things parents in this state are looking for as well as a list of things parents in this state no longer use.
I’d even like to take it one step further and create a respite hour bank where one parent can donate a few respite hours to another parent in need. Kind of like how people donate their saved up time off to a co-worker looking at a surgery with a long recovery time.
It’s time to look outside the box and come up with new ideas.
We need to work together to have each other’s back in what ever ways we can.
Kind of like these trachs I received in the mail last week.
There’s no doubt that their sender could hear my sigh of relief all the way in Maryland.
PS: I’m working on putting together a meeting with Senator Dan Liljenquist, Holly Richardson, leaders in special needs advocacy and YOU, parents here in Utah who have children with special needs. I just got permission to hold this at Highland, Elementary. It’ll be in January. Stay tuned, k?
Been there so many times. I feel the pain! I do have other parents to swap items with.. And its frustrating how the insurances are different state to state (and when I say insurances I mostly mean medicaid).. Here we are allowed one trach per month but when we are in the hospital we get stocked up on them.. We change trachs every week sometimes multiple times a week. We do clean and reuse for up to a month though.
Khourt recently posted..Can I just say
We have two trachs in rotation at anyone time. I switch out Parker’s trachs daily. So one is in use…..one is getting cleaned.
I’ve had times where we’ve had to use the same 2 trachs for months on end as we fought with our insurance company.
Maybe I’ll see if I can stock up on trachs during this next surgery.
Then there is the fight for 14fr g-tubes. Medicaid provides I think TWO a year, but our insurance will cover a few more. HOWEVER, when you have a kid who likes to pull the suckers out of his tummy and pop them…..you are still kinda screwed. sigh.
Twitter: therextras
says:
The underground appears to be heaven sent!
Efforts to organize IRL support seems to necessitate local emphasis, I think. Wishing you luck – with the expectation that many will benefit from your efforts.
Barbara recently posted..Stuff
My son got his trach removed in 2009 and I had a whole attic full of trach supplies and had no idea what to do with it. I didnt want to give it back to the medical supply place because i knew they wouldnt give extras to paitents. Then I met up with an old friend that I had in middle school and come to find out one of her twins had a trach and she kept talking about how limited she was with supplies well needless to say I found someone that really needed it and would have it just in case she ran out. But Im glad I can across this website because I will definetly let folks know about this. Bless you all and remember things do get better and there are angels out there!!!
I was just thinking the same thing! It would be great to have a website like KSL.com where you could put your supplies up and people could find stuff they may need!
Who said you needed a new trach every month? They told me they can last up to a year! Jax are specially made, they make me 3, and I keep them until they think he is in need of new ones!
The infectious disease doc told me that MRSA can actually live on a trach, even with excellent cleaning.
With the prevalence of MRSA, he told us it would be a good idea to simply add new trachs each month.
Well when you do start it, I have a walker in my garage. Utah kids generally will have people who post extra supplies frequently.
Nancy recently posted..Latimer- A mercy Killing
Twitter: valmg
says:
What a great idea. I know I’m here in New Jersey but if there is anything I can help you do to get this project off the ground I’m happy to help. Maybe on a larger geographical scale the response will be greater. How can I help?
I think you should see this post about medical resources for special needs kids. I hope it helps! I dont know how to create a link, i’m writing this from my cell phone. http://www.lovethatmax.com/2010/12/guest-post-kindness-of-strangers-and.html?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+ToTheMax+%28To+The+Max%29&utm_content=Google+Reader
Twitter: LifeAfterIEPs
says:
The special needs underground is an idea whose time has come. And the respite hours barter system works great! For kids enrolled in school – there’s networking w/ parents of classmates. Maybe connections could also be made via pediatricians offices and/or early intervention providers?
Mary recently posted..Personal preference portfolios for kids with limited communication