Logistics involved in cathing

self-cathing key


 

yellow_sc_ana It was really easy. The nurse called everything in for us, and they have an automated service that will call and say, “You’re running low on supplies. Do you need to reorder?” The company’s been really great too – they’ve been really, really nice, kind of personable the way they talk to you and everything.

 

Mother of Gabriella, age 12

 

yellow_sc_ana They were able to get us more
Foley The company that we deal with, we’ve been dealing with for years and they’re really good. When you use a straight cath, it doesn’t fit on to a Foley bag, so there is a little attachment. When we went to back to Boston, when they took the suprapubic catheter out, I said, “Okay, here’s my problem: the straight cath doesn’t fit the Foley.” But they had a great little adapter that they gave me. I brought it home and gave the numbers to our supplier and they were able to get us more. So supplies have been really good, they’ve been great with those.

Mother of Robert, age 16

 

blue_sc_func A saving grace
It’s really been a saving grace. Nobody really knows about it. She does it now twice a day at school. The only reason at school that she goes down to the nurse’s office at all is that a) all of her supplies are in one bathroom and b) Meghan has a tendency to get lost in the middle of activities, so if we just sent her to the bathroom at school where nobody was waiting for her to come back she might be gone for twenty minutes. But at home or in a store or anywhere else, when she needs to do a catheter, I say, “Go do a cath!” If it’s been more than five minutes, or more than two minutes, I know to check on her. “Hey! How’s it going? What’s going on in there?” She has her own section of my pocketbook where all of her catheter supplies are and all of my diabetes supplies are. And we also have her own bag in the car that has extra supplies and extra underwear, just in case.

Mother of Meghan, age 8

 

green_sc_neuro Filling the gaps
She qualified for the Katie Beckett Medicaid* program, so that filled in the gaps that our insurance company won’t. Most insurance companies will not cover consumable medical supplies, so the caths are not covered, but braces are because they’re durable. Medicaid has picked up some of those things for her, so we use that as a supplement to her regular insurance.

Father of Siobhan, age 9

* Editor’s note: Medicaid requirements vary by state, and this may not apply to your family. However, if you’re having trouble with coverage, it may be helpful to request a caseworker through your insurance or contact the state Medicaid office.

 

green_sc_neuro We kept a small supply of catheters, gel, cleaning products, etc. in a little fishing tackle box in the locked cabinet at the school office. He could easily get them with the school secretary. At home we had a little rolling cart that he rolled to the toilet in his bathroom and managed all of his supplies in. We had a medical supply company deliver once a month in an unmarked brown box.

 

Mother of Ryan, age 11

 

green_sc_neuro My concern is when he gets older
Insurance covered everything for the longest time and then all of a sudden I got this $500 deductible this year, which I think was because my insurance plan changed. That was kind of horrific, but I think it’s just a one-time deductible, I think the rest will be covered. But my concern is when he gets older, when he’s no longer under our insurance. One box of supplies is like $750, and you know, it’s a lot of money! And since he has a preexisting condition, I wonder about him not getting insurance and if he can’t get insurance, then he re-tethers, and then he needs another surgery…that is scary.

Mother of Henry, age 12

 

green_sc_neuro A reason not to reuse them
When he first started, he had to reuse catheters – the insurance wouldn’t cover a larger quantity, we were required to reuse them. And he acquired a lot of infections when he did that. Then the doctor rewrote the prescription in a manner that would allow him to have ample enough material that he wouldn’t have to reuse the catheters because they were able to show a reason for him to not reuse them. And he hasn’t had anywhere near close to the infections he used to have as he did when he had to reuse them.

Mother of Ethan, age 13

 

green_sc_neuro Hoping they will pick up the balance
We go through about 180 catheters a month, and my insurance used to pay everything but 20%, which was about $50 a month. And my insurance just changed, and now they only pay 50% of it, so it’s costing me $112 per month!
Someone just told me that there’s a Medicaid waiver, that they’ll waive your income for Medicaid. Your insurance is still primary, but Medicaid is secondary and it will pick up those deductibles. But you know how that goes, it’s a federal program, so it’s like pulling teeth to get the application forms together…I’m hoping that once she gets a Medicaid waiver they will pick up the balance of her catheter cost.

And I didn’t know about this! I only found out about this because this woman whose kid gets catheterized at PT told me. I said to her, “Do you reuse your catheters?” and she said, “No, we just buy new ones because the insurance pays for it.” I said, “Oh, you’re really lucky! Mine’s only paying 50%.” She goes, “What about your Medicaid waiver?” And I said, “What Medicaid waiver? We don’t qualify for that, we make too much money.” And she said, “No, they waive your income, they just give Medicaid for any kids with chronic neurologic illness!*” And I’m like, “What?” She said, “Didn’t your case worker tell you?” and I said, “What case worker?” And I’ve basically been my case worker, so I didn’t know about that!

Mother of Kayla, age 14

* Editor’s note: Medicaid requirements vary by state, and this may not apply to your family. However, if you’re having trouble with coverage, it may be helpful to request a caseworker through your insurance or contact the state Medicaid office.

 

green_sc_neuro They’re too expensive, the good diapers. He used the Velcro not the plastic, because his skin breaks out with plastic tape or anything. But MassHealth isn’t covering for it anymore, so I’m trying to graduate him to the pull-up…with the plastic diapers, when he goes to the bathroom he has to throw it away and take another one, which is kind of just wasteful. I think it’s cheaper to use the Velcro ones because you’re using less of them than to use the tape ones and have to order twice as much!

 

Mother of Alex, age 17

 

green_sc_neuro Change is good!
He doesn’t do change well, so whenever something would come up, he’d be like, “Ugh, I have to do this?” or “I have to do that?” or “This has to change?” For example, with his medicine: he was always on Protonix (Pantoprazole) because he has reflux as well. Every time we’d turn around, we’d go to the pharmacist, they’d keep changing it. So he was on it for like two years, then I went and the pharmacist said, “Oh, insurance isn’t covering this.” Like, “What do you mean?” And he was like, “Ma, how can they do this? They’re not taking the medicine, they have no right to do it!” I said, “Just let’s call and see what’s going on.” And then I learned that each year it’s different, MassHealth covers whatever’s cheaper, so they gave him Prevacid (Lansoprazole) In the end he was on the Prevacid, and one morning he goes, “Mom, it worked better!” So I said, “See? Change is good!” So don’t try to assess the situation. Try it first, and then after you try it, look at the whole picture.

Mother of Alex, age 17