had our hearing for nursing care

[Esties mom]

well i had to sit for 4 hours listening to the medicaid people say Estie was not vent dependent. They said because she was not staffed at night they had no proof that she used her ventilator. she sprints from her vent 2 times a day for 3 to 4 hours at at time. they insisted the dr said she only used the vent while sleeping because the last pulmonary note said estie uses the vent while sleeping and at nap time. Estie is 9 years old she does not take naps. they insisted that suctioning , trach change, plugs etc were not high technology and that anyone can learn to do them and if they have problems they can call 911. they would not accept my notarized letter from my pulmonary dr. because he wrote it after i got my denial and said he only was trying to please me. He is head of the pulmonary dept. at arkansas childrens hospital. they said i use my nursing care in the daytime because i need a babysitter. they totally disregarded there regulations for medicaid private duty nursing and made there own. they said she does not meet the ADLS because she can crawl to the bathroom and wheel her wheelchair. Also does not meet the hyperalimentation because she is fed g tube with a pump 3 times a day and not continual, she is fed continual at night and again they said they could not say that she was because she is not staffed at night and they have no proof. i was so disgusted i almost told them where to go and walk out of the hearing but my attourney calmed me down. so i do not have the answer yet but have heard the hearing officers go with medicaid because they are all part of dhs

[Ainsley's Mom]

Originally Posted by Esties mom

well i had to sit for 4 hours listening to the medicaid people say Estie was not vent dependent. They said because she was not staffed at night they had no proof that she used her ventilator. she sprints from her vent 2 times a day for 3 to 4 hours at at time. they insisted the dr said she only used the vent while sleeping because the last pulmonary note said estie uses the vent while sleeping and at nap time. Estie is 9 years old she does not take naps. they insisted that suctioning , trach change, plugs etc were not high technology and that anyone can learn to do them and if they have problems they can call 911. they would not accept my notarized letter from my pulmonary dr. because he wrote it after i got my denial and said he only was trying to please me. He is head of the pulmonary dept. at arkansas childrens hospital. they said i use my nursing care in the daytime because i need a babysitter. they totally disregarded there regulations for medicaid private duty nursing and made there own. they said she does not meet the ADLS because she can crawl to the bathroom and wheel her wheelchair. Also does not meet the hyperalimentation because she is fed g tube with a pump 3 times a day and not continual, she is fed continual at night and again they said they could not say that she was because she is not staffed at night and they have no proof. i was so disgusted i almost told them where to go and walk out of the hearing but my attourney calmed me down. so i do not have the answer yet but have heard the hearing officers go with medicaid because they are all part of dhs

Wow! I'm so sorry.

[kctwinmommy]

OMG!!! That is awful!! WTH is going on with these people!?!?! I'm worried about our hearing, whenever it gets scheduled! We're in Illinois...

[lonewolf]

That's truly awful. I hope that somehow you get the nursing help you need.

We do have nursing care but they've been talking about moving us over to carers for a while now. Recently our lead nurse went on an agency training course where she bumped into our case manager. He mentioned that he'd had an email from the commissioner telling him that Toby was to be transitioned over to carers as a matter of priority, and that his care would be being transferred over to a different agency. I am worried about carers taking over his care as they are not deemed to be competent/qualified enough to care for him while he's in hospital, despite being surrounded by plenty of medical/clinical support. They are not even allowed to suction him. Yet, somehow they are now deemed qualified to look after him in our home where we do not have that support. I'm doubly concerned about the change of agency, as at least if we stayed with our current agency the carers would be trained by nurses who know Toby. I have no idea how they plan to train up carers from a new agency.

We just had an accidental decann at 0200 so the night nurse had to call us in. It's scary enough anyway, but I dread to think about this happening when we have a carer.

I know there are some excellent carers out there, as we know one at GOSH who we'd have in a flash if only she'd travel out this far, so we might be lucky. But I sincerely doubt that we'll get anyone who has any trachy experience, so we'll be back to square one.

[davisgld2]

That is absolutely horrible!!!!! Does your DME company come out and take readings from the vent??? Our company comes out @ 1 per month...one of the readings shows the number of hours that the vent is used......just a thought...hope that this works out in your favor.

[Cillian's Mom]

This is ridiculous!!!! I can't believe they even said these things to you, what an awful thing for you guys to go through. All vents should have hour meters on them, I know on the Trilogy that Cilly uses, it can be downloaded into software and a report of compliance usage can be generated. What will they have you do when your child gets sick with a resp infection and requires more vent usage and suctioning? I wish there was something I could do to help. I will keep you in my prayers.

[SammyJo]

Horrible! I am so sorry! If more people knew that medicaid provided nursing to families in need, I am SURE they would rather their money go toward nursing than providing financial supplements to people who are cheating the system and continue having children they can't support. Hope you get a favorable decision. Keep us posted!

[JessicaLalonde]

Thats absolutely ridiculous! Can they not do a nighttime study for one night to see that she is vented and does a nighttime feed?

I am just in disbelief that they said "anyone" can do trach care because its not high technology..

[glowingpurpleaura]

thats BS go to the media!

[Sweet Harrison's mommy]

This makes me sick to my stomach! What in the world is wrong with these people! I wish for 1 day, they could just "shadow" the parents of medically challenged children...maybe then they would think differently about cutting necessary nursing hours. So sorry