how much nursing assistance do you receive?

babybear · #1 11-13-2008, 03:57 PM

Gabriel goes to a specialized daycare during the day, but we don't have nurses come to our home. We do get 50 hours of respite care every 6 months, but no overnight help. We really don't need anything at night since Gabriel isn't vent-dependent and sleeps through the night, so the 50 hours is a real bonus. I was just wondering how things varied from place to place.

Baby1107 · #2 11-13-2008, 05:36 PM

I would love to have some specialized daycare in our area. Austin is a year old (had had the Trach since 3 months). Next Monday is our FIRST ever nursing shift. This will be daytime nursing assistance for 40hr/wk.

drct1245 · #3 11-13-2008, 06:35 PM

Even though we are decanned, we still qualify for at least 10hrs a day (they give us the hrs in a lot, so it's not limited hrs per day). For us, Medicaid's rule is that if a child has ever had a trach and cannot keep sats above 92% on room air, then that child qualifies for PDN. Our nursing agency was going to pull all our PDN hrs until I informed THEM about the law. (ggggrrrrr.... don't get me started)

So we have some hrs for the next 6 months - just enough to get us through the yucky season!!

Search on nursing in the archieves, I know it's been discussed before.

Mom2TwinsPlus1 · #4 11-13-2008, 07:06 PM

We are entitled to 12 hours a day 7 days a week. We don't use any, anymore. Too many problems and a total waste of time in my opinion since Emma is stable, and I know those nurses are problably needed elsewhere

KJKK8437 · #5 11-13-2008, 07:20 PM

Our old insurance company grudgingly agreed to pay for 8 hours a day after Alex's palate surgery. They agreed to more earlier, but it was always a fight.

In Virginia, trach kids qualify for a "tech waiver" that entitles them to 24 hour nursing coverage. We were not eligible because our insurance policy was written to cover "all medically necessary nursing". Medicaid interpreted this as a gapless policy and would not assist us even if the insurance company turned us down.

HOWEVER, we applied for and qualified for respite care, which got us the Medicaid card. Then we applied for another medicaid program designed to provide nursing care for Elderly and Disabled folks based on a scale of medically necessity. We scaled Alex and fell off the top of the chart and were immediately accepted. (In fact, the folks that ran the program wanted to know why we weren't on the tech waiver because they never had a child score so high on the need list.) The "need" is based largely on the amount of technology required, such as Gtube, complex meds and trach tubes.

Having said all that ... we are like Lori. I don't know if I am difficult, or if our nursing is just fairly poor, but we couldn't find a full time nurse we could work with. We had two, but we lost one when the insurance fought us, and by the time we got coverage again, he had gone to work with a friend. The other got promoted to management. Everyone else only wanted to work 1-2 days a week, and it was harder on us to have 7 or 8 nurses over the week then it was to find another solution.

Our "solution" was to hire a personal attendant to help us with Alex, and we used Medicaid dollars to reimburse part of her salary.

Oh -- for ARC members, the elderly and disabled respite care program was not a waitlist program. It is not the same as program designed for the mentally disabled -- for which there is a substantial waitlist. It is purely a respite program. For us to keep the medicaid card, I MUST accept respite hours on a monthly basis. Weird, eh?

Mom2TwinsPlus1 · #6 11-13-2008, 07:26 PM

I should add we only qualify through medicaid (our only insurance right now) for he 12 hours 7 days a week due to Emma's vent. Without it we do not qualify for any nursing

Hope · #7 11-14-2008, 12:48 AM

Shelby had 56 hours/week, but we eventually settled on one nurse doing 40 hours M-F (daytime), and no nurse over the weekends. Weekend nurses seemed even more unstable than weekday ones!

We were warned by nurses and the agency that we'd lose nursing altogether if we didn't use all our hours, but it never happened. I don't know if they honestly thought that or if it was just a threat for them to get all the hours/money they could.

Hope

Ainsley's Mom · #8 11-14-2008, 01:04 AM

I think it varies greatly depending on a person's private insurance or whether they are on Medicaid.

Initially we had to fight fight fight with insurance to get coverage. They would provide night nursing for 10 hours a night and then 8 hours a night. We got a handful of day shifts but only post surgery as a way to get her out of the hospital so they didn't have to pay hospitalization. They did a benefit exchange and took it out of our major medical because home nursing isn't covered under the policy. We had to appeal make threats it was terribly stressful. We had started transitioning away from having night nurses after 10 months and they stopped covering it completely at 1 year but by that time we were ready to give it up. By that time she needed little suctioning during the night.

But she required a LOT of suctioning during the day, like 50 times a day. And she has had a lot of issues. Tube fed. Had reflux/vomiting. Required a lot of therapy. Had two cranial surgeries. G-tube surgery. Hip surgery and was in a cast for 3 months and brace for even longer. It's hard to believe they thought I could do it without help. It's hard for me to believe I made it through that first year without any help during the day. I also had a (then) 5 and 3 year old. I'm amazed I didn't go postal.

So earlier this year I applied for the Medicaid waiver in our state (had been previously told I had to exhaust our policy first) and actually got approved because insurance denied us! Wow! They approved us for 10 hours a day of nursing care + respite. We do 2 10 hour shifts. It has been a great help. I finally feel I can lead a somewhat normal life now. I drive the carpool those days, pick up my kids from school. Take them to ballet class. Go grocery shopping. Go to doctors appointments. It's not without it's headaches. I really wish we didn't need a nurse but unfortunately we do.

A nursing case manager once told me that nursing is like a drug addiction. Once you get started it'll make you miserable but you don't know how you'll manage without it and it's really hard to give it up, even when you want to.

Perhaps more than you wanted to know.

cbissell · #9 11-14-2008, 05:05 AM

cariaad · #10 11-14-2008, 06:36 AM

A it'lnursing case manager once told me that nursing is like a drug addiction. Once you get started l make you miserable but you don't know how you'll manage without it and it's really hard to give it up, even when you want to.
Susan that is a great analogy. Makes me glad i never got "hooked"! Deb