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View Full Version : Help - I'm the lone caretaker (in California)


suzannekearney
03-06-2010, 05:34 PM
Our son has a trach and g-tube and we have been told we don't qualify for government provided home nursing care because of our family income being over the SSI limit. I have applied for Regional Center but their respite hours have been cut due to the state budget. Can anyone offer advice?

jamie
03-06-2010, 06:06 PM
Hi Suzanne
I don't have any advice just sympathy.
We live in California too, my son is trached and on the ventilator at night. He is 13 and I am a single parent trying to work. We have been turned down for every type of assistance. Even help on our SMUD bill was denied because he doesn't use THAT much electricty.
Even though he is on a vent he never recieved nursing. I have to wake up many times throughout the night to care for him and then go to work in the morning. We applied for In Home Health Services and they sent a social worker and she said he qualified, and then they never sent us the packet for him and they will not return my phone calls. I think the state is so broke they have no more money for these resources.
I often am on this site in the middle of the night because I am up taking care of Evan and needing advice.
I hope your baby's condition imporoves soon and no longer needs the trach.

LKN
03-06-2010, 09:04 PM
We were unable to qualify for government aid either. In the end, we found a nurse who would watch our son for us during the day while we worked, but we paid her out of pocket. If you have Arc services in your area, they will sometimes provide respite for trached children.

Does your private insurance cover nursing? If not, you can sometimes have your doctors write orders for nursing and it is covered by insurance--sometimes it works, sometimes not.

We are not in California, but I'm sure others will chime in. Good luck! :)

Melisande
03-06-2010, 09:25 PM
If the budget are really that bad in states, which I know they are these days, I would seriously consider calling your state representative/senator/governor. If that doesn't work, I'd go to the media. A kid with vent should never NOT get nursing care!!:mad:

WeAdoptKids
03-07-2010, 12:48 AM
Just the trach might not get you any outside help depending on where you live. Seems some here get nursing with just a g-button. Here in Nevada the max you would get is 20 hours a week, but if they are in school or daycare, then it goes down to 10 hours a week.

Many here also choose to go it alone, without the nursing. It may seem hard at first, but does in fact get easier.

Lean on everyone here. They can help you and you can ask questions that may make it all easier for you as you find the way to go.

Good Luck,
Roberta

Kamilah's Mommy
03-07-2010, 05:45 AM
Suzanne, have you tried applying for medical through their waiver program? I forgot what the actual name is but I think it's something like In-Home Operation?
Anyways, we're in Cali too, and we didn't qualify for various state programs because our income was over the limit. Our Social Worker helped us apply for medi-cal through their waiver program. (The way they determine your eligibility is by looking only at your childs income/assets. Does that make sense?)
If you're working with a social worker they might be able to tell you more about it.
Well that's how we're getting nursing.

Niff
03-07-2010, 09:05 AM
No advice but wanted to offer big :hug:s.

We have been turned down for every type of assistance. Even help on our SMUD bill was denied because he doesn't use THAT much electricty.

Please tell me that's a joke. Our electric bill is $300-400 a month with Mackenzie home. Before it'd be a bad month if we hit $130.

TommysMommy
03-08-2010, 01:58 AM
Our electric bill is $300-400 a month with Mackenzie home. Before it'd be a bad month if we hit $130.

Ours was this high as well just because of the concentrator and compressor. Whenever Tommy was in the hospital longer than 2 weeks, our bill always dropped by at least $100.

jamie
03-08-2010, 10:34 AM
No advice but wanted to offer big :hug:s.



Please tell me that's a joke. Our electric bill is $300-400 a month with Mackenzie home. Before it'd be a bad month if we hit $130.

We do get the low income discount, but that was before the compresor and the ventilator. This month they took %15 off of our bill making it only 120 dollars.

Christamae
03-08-2010, 01:21 PM
I hear ya. I have a trach, ventilator, TPN, and wheelchair and can't get a nurse. My Dad takes care of me and my sister...It's hard.

twintotwin
03-08-2010, 04:06 PM
If the budget are really that bad in states, which I know they are these days, I would seriously consider calling your state representative/senator/governor. If that doesn't work, I'd go to the media. A kid with vent should never NOT get nursing care!!:mad:

Exactly what I was thinking! I hope you find a way. I can tell you for us, in NJ, we had to apply for "Medically Needy" so when our private insurance capped they could still get help.

Do you have regular private insurance? Because I'm thinking if you don't qualify for home care you wouldn't qualify for Medicaid altogether? If you do have private insurance then Medicaid would certainly turn you down until you've exhausted all other arenas.

Feistyboys
03-11-2010, 12:50 AM
I agree with the medi-cal waiver. We had to get that for our other son who also has major medical issues. We were over income. He was able to get it under a mental retardation NOS diagnosis. Brennan still gets the medi-cal because he is a facility. The economy sucks. I hope you find help soon. Have you looked into IHSS? It looks like you can still qualify if over the income.

suzannekearney
03-12-2010, 10:38 PM
What is IHSS? I am applying for a Medi-Cal waiver through Regional Center but have been told this can take months... and I need a night nurse NOW while Timothy is still a baby! We haven't slept in weeks!

Also looking for words of wisdom from people who have managed to cope without a nurse, since this will probably be our situation for the time being!

Thanks all.

TommysDad
03-12-2010, 11:28 PM
Suzanne,
I'd find out from Rosa who her Medical Waiver Representative's name is. Call her yourself, and explain your situation. Some states offer many different "waivers". Somtimes the people who work for the State don't even know what "waiver" you are talking about! So, if you can find someone who knows exactly which "waiver" your child needs to allow for nursing a child one-on-one who's got a trache & a vent that might help speed things up a bit, but it is still a lot of red tape.

As far as what we have done when we were short on nursing, my husband and I just took shifts. When one was just too tired to stay awake, we would wake the other one up to take over. I stay at home with Tommy, and my husband works full-time. It was very hard in the beginning. I would get physically sick from lack of sleep, but we made it through. And now as Tommy has gotten older, he's gotten much stronger and doesn't seem to require AS MUCH nursing, but still supervision 24 hours a day.

I hope somehow, someway, you can find the nursing help you need & deserve!

~Maggie (Mother to Tommy who always takes over daddy's log-in:blush: )

lynn
03-13-2010, 01:17 AM
I dont have nursing.. I had it in the beginning when we came home but the actual shifts that had coverage were few and far between... I set up an air mattress beside Joseph's crib so I knew I would hear the alarms. I tried to nap after dinner when I knew my husband was available to be with Joseph- when he went to bed usually around 1am I took over. I often just layed in the room without actually sleeping-but it did help to be able to lay in the dark quiet room and rest. This arrangement lasted about four months.. I now sleep in my room with a baby monitor on very loud.. I am an extremely light sleeper, and usually get up and out of bed when I hear the change in breathing..(right before he wakes up for a bottle, or needs changed) I am in his room before he can even work up to crying.

destinyandmiracles
03-13-2010, 02:22 PM
Things like this really make me mad. I just don't understand why there isn't more help out there for us moms/families. Here in Canada we can get 43 hours per week of nursing just for a g tube!! Ashton was trached a couple of months ago but we are not allowed more. Same as when he had just a g tube.

I hope you can figure something out! HUGS

Momoffive
03-13-2010, 02:45 PM
Since being on this site, I cannot believe the differences in Nursing/no-Nursing etc. Across Canada, with provincial healthcare, there are obviously differences - here in Manitoba we are allowed 20 hours per week of respite (hours for school are from a different source) but there is such a nurse shortage that it's a joke to think we could get the 20 hours. I occasionally ask for 8 hours and there is no one to fill the shift. Also, the 15 minutes before school each day, and the hour/hour and a half after school are also considered Respite, although all I'm doing at that time is making my way home on a bus. We've never had overnight nursing - the homecare nurses seem to be able to choose their shifts and if they don't want to do overnights, don't have to. However, we have been told, trach and vent, or trach only is RN care. Tube feedings can be LPN or Health Care Aide level of care, and usually on a visiting nurse type of schedule. I guess I am particularly shocked that any place would deny nursing to a trach family. Sigh. Guess we have to be a louder or squeekier wheel.

Ainsley's Mom
03-13-2010, 03:05 PM
I'm not going to say this is worth the headache it would cause. But I'm assuming you have private insurance and they denied nursing care? If you are truly feeling unable to manage you could talk to your child's doctor. A trached child does need constant care and if you are unable to do it, they could make a case for admitting him to the hospital (for safety). That puts pressure on the insurance company. And they may be willing to grant temporary nursing coverage through a benefit exchange using your major medical. However, it still takes time to get a nurse set up through a home health agency. Sometimes the nurses just aren't available immediately and they then need to go through training so it takes some time. It could take just as long as getting onto a Medicaid waiver. For us, I had heard horror stories about how long it takes, but once I got through to the right department (that was the trick) it happened fairly fast, within a month or so after completing a lot of paperwork and 2 interviews. But we are in WA. Good luck. It's hard in the beginning. :hug:

Kamilah's Mommy
03-13-2010, 05:10 PM
The waiver that I'm talking about is called In Home Operations medical. If you want I can give you the number and name of the person that I talked to. Just let me know and I'll PM you.

It didn't take us too long to get approved for the waiver. What was long was finding nurses to cover the hours we needed.

CCHSMOM
03-13-2010, 05:22 PM
We don't have any nursing either, and my daughter is on SSI and Medicaid, is 24/7 vent-dependent, and on continuous j-tube feeds.

Have you talked to anyone from California Children's Services? I talked to someone from the equivalent agency here in Ohio a few days ago and she emailed me both the form to apply for the waiver and the info on where to take it. She told me that medicaid will always give parents the run around, but going this route should get someone out to our home within a few weeks to determine eligibility for all the Ohio waiver programs. The website for CCS is: www.dhcs.ca.gov/services/ccs - they have links for eligibility, how to apply, services, etc. Don't know if this will help, but it can't hurt to call them and ask. Don't give up, and keep pestering people until you get what you need. I've had to go to our governor's advocacy office a few times to get supplies for my daughter that medicaid said weren't covered, and it has usually worked.

In the meantime, sleep whenever you can - especially whenever your son is asleep (I've done the mattress on the floor thing many times), and ask family, friends, and local churches for volunteers to just watch Timothy while you sleep. Just be sure they know to wake you if any alarm goes off or if he looks like he needs anything. It's not the same as a nurse, but it might give you just enough relief to keep functioning until you can get nursing. Good luck and lots of hugs!

kadiera
03-13-2010, 09:12 PM
In Michigan, one key to getting medicaid was being in-patient in a hospital for 30 consecutive days. Somehow this triggers SSI based on the child's income alone, and that meant our income didn't count towards medicaid in the beginning.

As far as not having nursing...

The first 3 months we were home, we desperately wanted to be a "normal" family, so we refused all weekend nursing hours. We only had nursing weeknights because our insurance had threatened to call it "custodial care" if we only had nursing on weekdays while we were at work...and they don't pay for custodial care. (Other than that, our insurance is phenomenal, and we've only had one other tiny thing not be covered, so I'm not complaining).

We started out sleeping on a twin bed in Alexander's room. After a few weeks, we slept in our room with a baby monitor. In recent months, the few nights we don't have nursing, it depends - if we were really tired, I slept in his room.

Tonight is Alexander's first night sleeping in that twin bed. Not quite sure what we'll do the next time we don't have a nurse, but we figured this had to be better than him falling out of the crib....

Ainsley's Mom
03-13-2010, 10:21 PM
In Michigan, one key to getting medicaid was being in-patient in a hospital for 30 consecutive days. Somehow this triggers SSI based on the child's income alone, and that meant our income didn't count towards medicaid in the beginning.

As far as not having nursing...

The first 3 months we were home, we desperately wanted to be a "normal" family, so we refused all weekend nursing hours. We only had nursing weeknights because our insurance had threatened to call it "custodial care" if we only had nursing on weekdays while we were at work...and they don't pay for custodial care. (Other than that, our insurance is phenomenal, and we've only had one other tiny thing not be covered, so I'm not complaining).

We started out sleeping on a twin bed in Alexander's room. After a few weeks, we slept in our room with a baby monitor. In recent months, the few nights we don't have nursing, it depends - if we were really tired, I slept in his room.

Tonight is Alexander's first night sleeping in that twin bed. Not quite sure what we'll do the next time we don't have a nurse, but we figured this had to be better than him falling out of the crib....

That's a different type of waiver and it expires after a year. We were on that one for the first year but then after the year was up we were denied due to income. Then we applied under the medically intensive waiver (in our state) which for kids that qualify (medically) they base the medicaid off the child's income not the parents.