Special Needs Underground

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.

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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.

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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?

10 Comments

  1. Khourt Dec 1, 10
    • Tammy & Parker Dec 1, 10
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