How To Prepare When A Loved One Has A Severe Disability

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Preparing for people with disabilities is a topic that isn’t covered much, because I feel like the general consensus is that the sick and disabled will, in fact, be the most susceptible and first to go.

I have twins with cerebral palsy. One son is highly functioning, and if something were to disrupt his care, the worse that would come of it is that the bracing we have to continually re adjust would not be done and he could wind up with less than perfect growth, but he could live and survive.

The other, is another story. He is total (think nursing home) care. We’ve worked hard to stock additional supplies, back up for electric and electronic supplies. We have started buying more of our equipment as permitted financially, but that is mostly preparing for a rationing of care type situation. I know that because he doesn’t “add” anything back to society, he will be one of the first have have services and supplies cut, when/if that happens.



Anyone who is preparing with family with limited functions, I have very few words of wisdom other than these.

1. Stock up on medications. I have as many generic medications as I can get. Insurance will only permit a refill every 25 days on most (14 days on respiratory treatments), so I fill as often as I am able, and rotate what medications I can purchase (yes you can purchase additional refills. The limit on refilling is only limited to what you file through your insurance). My pharmacy works with me to work out a rotation plan. The reason I give them is that I want to have a 30-60 day on hand supply in case of tornadoes/heavy snow/ice. They understand and appreciate my forethought in this so there is less pressure on them in an emergency situation. Might I recommend a small locally owned pharmacy? They are usually easier to work with in these instances.



2. A Nursing Med book- so that you can properly ensure you administer any stocked up drugs… or maybe that fish-mox you picked up in your preps?

3. Medical supplies- Anything you need to care for your loved one. For us, it’s pulse-ox probes and 4x4s and gloves, and diapers and feeding tubes (with foley caths as backup to mickey buttons for feedings). Set up with a durable medical supply to auto fill those EVERY month. You might not use all of it every month, but that is how you start your surplus. I currently have 20 boxes of both medium and large medical gloves. You can NEVER have enough.

4. Our insurance replaces our nebulizer every 5 years, and I do that faithfully. I also stock up on nebulizer masks (they are like $3 in most drug stores, or at least they are where I live.).If your insurance gives you 4 a month, try to make do with 2 (you can soak them in a vinegar/water bath to disinfect them) for a few months to have a back up. We can make ours last A LONG TIME just by taking care of them. Find out what your insurance will allow to be replaced and how often.

5. Try to find natural alternatives to medications, how to grow them and how to create the medication out of the plant. This is where I am now. I can puree regular food down and put it down a tube for him (have 2 years worth of tubes backed up), so right now my focus is getting a handle on what herbal remedies and medicines I can obtain and use.

One other thing I’ve done is look for acceptable alternatives. For example, Dylan (my more profound boy) is on Pediasure, but I looked into the nutritional content of Ensure, and in a pinch, I could use it. The reason I looked at Ensure is that it comes in a powder formula, where Pediasure does not. For his 72 hour kit, I packed Ensure powder (in case I am not able to grab a case of Pediasure on my way out the door) and the Sawyer water filter kit so that I know he has nutrition.



As far as our family is concerned, I know the above things to be true and these are the things I have done. I can’t speak for other states, or even counties within my state, or all insurance companies. Please don’t take this as hard and fast truth for you. I just know these things have helped us in our plight to be able to take care of our family, these are merely suggestions to get you started, thinking strategically, figuring out ways to make do with what you have to stock up for the future.

By avgokiemom – www.thesurvivalmom.com


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1 Comment

  • By C.C., February 3, 2013 @ 12:40

    Thank you, I have a spinal cord injury and have just started to stock up extra med’s and supplies. Your info will come in handy.

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