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Help My Friend w/disabled enteral feeding child

cheneyfox
0 Recommendations

I have a friend who has a child who is completely disabled. She is on enteral feedings. Recently she and her family, she has 2 other children, moved to a rural community. Now she is having trouble finding help for her severly disabled daughter. She is looking to get bags for a kangaroo pump and she thinks she has to get them from her home health provider. Is this true? I don't know much about this since I am a TPN patient. Any help for my desperate friend would be greatly appreciated.

CC

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Speech therapy

9 replies

happyone

Her insurance in most cases will cover the bags. She should get scripts and sign up with a home health care or medical supply company which would deliver the supplies she needs. She might want to contact the doctor that placed the Gtube as they would have the contact information for different suppliers.

turtle

another resource and i know things like this vary by state is IHSS (in home supportive services) the application can (at least in cali) can be done over the phone, and while it can take a few weeks to get an appt, a social worker comes out to your house and evaluates the disabled person and their living situation and it is a bit different for kids than for adults, but you can be given so many hours a month in which money is provided (by the county) to hire someone (and you have the right to hire ANYONE you choose) to help. also social security disability services ARE available for disabled children and then the child would have medicare (and possibly also medicaid). now when i was getting NG hydration i got my supplies through the outpatient pharmacy at my hospital, but the doctor who placed the feeding tube should be able to refer you to a place that supplies and delivers the supplies directly to their house.

turtle

oo and the Oley foundation has a page on their site where people have listed items that they don't need anymore and that could also be a resource for some supplies.

cheneyfox

Thanks for the information. This child is severely disabled with a genetic abnormality. She has had a g-tube since birth. So she has medicaid and has help, etc. The problem is no one in her new rural area wants to take her medicaid. She is trying hard to find another doctor and home health company. She thought if she can just get the bags it would buy her more time while she searches for another provider. I will tell her about the supplies on this website.

CC

feeder1

Your home health provider should be able to help, you will still need a script from a doctor. We are using Walgreens Home Health for 2 years plus and are very pleased even though I am not a Walgreens store fan. Our pump is an Entreralite from Zevex. Walgreens supplies the bags and the pumps and an IV stand. I went on line and purchased a backpack and fannypack that holds the bags allowing patient to not be homebound all the time.Hope this helps!

cristyandlaura

I'm in Ohio. It's really hard to get some services in my rural area, especially speech therapy in the home. Laura has medicaid and hasn't had any problem securing bags for her pump. We use Apria. I know they are also available from Nationwide Childrens and another company called Active Style (I think)? Either way they each can deliver straight to the house. I'm not sure how big their networks are, Apria is based out of Conneticut I think. Let me know if you want more specific contact info for these companies. The provider piece is going to be tough...I'm still looking for one that is actually good.

happyone

If the child is very medically involved, she might want to contact medicaid and see if her child is eligible for Medicaid to pay for an insurance plan. The way it works is they check the EOB's for the past year and based on that see if it's cost effective for them to pay your premium rather than absorb all costs of this child's care. Say the child cost medicaid 600,000 this year, to pay a $25,000 premium would be way cheaper than them paying another year of such huge costs. Medicaid then becomes secondary and pays for copays, coinsurance and deductibles.
I think all Medicaid recipients with medically involved children or adults should be aware of this option.
Dini

marycb

She should check with her home health care provider and see if they can ship supplies to her by UPS.
Our providers have often used UPS to deliver supplies to us. Do they live somewhere UPS goes? That way they could get supplies from anywhere.
Mary

prettykitty

I get mine from Providence Infusion and Pharmacy services here in WA State, and they take Medicaid and ship everything through UPS directly to your door. I'm not sure if they deliver out of state, but its worth checking into. I get my formula (Osmolite 1.2), feeding pump bags (for the EnteraLite Infinity pump), catheter tip syringes, and dressing change supplies once a month.

Also, I'm not sure if they do this anymore, but Allegro Medical used to take insurance information for enteral feeding supplies. You might want to check on there website to see if they still do.

Jessie

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