Caregiver compensation

[stringbandbeth]

Hey Now,
   I had to stop working a year ago because I am a caregiver/dialysis partner for my husband. We do 4.5 hrs of daily home Hemo and I really have to do about 90% of the work and treatments associated with it. He has been on dialysis for almost 14 years and he worked full time up until 3 years ago. He has  numerous medical conditions including a rare autoimmune disease and Nephrogenic systemic fibrosis so his mobility has been declining a lot.
     My question is does anyone know if there is any program to help pay family members for home health care? seems to me that I'm saving medicare a LOT of $ doing a whole bunch of stuff  that they would be paying professionals to do. Not for the dialysis specifically, I know they won't pay an aid to be your care partner,but all the other stuff I do. Personal hygiene, Medication management, transportation to Dr's. I have to take care of ALL the insurance and medical paperwork and balancing the checkbook. I'm pretty sure if I wasn't here that medicare WOULD be paying a home health aid to do what I do.
   It certainly would make it seem a little more noble if I could at least get a few hrs. of minimum wage for the full time job that I'm doing!!!!                                                                                                Alright ...thats the end of my rant...

[SugarBear]

Greetings stringbandbeth, this is a question I have heard while volunteering with one of the ESRD networks.  The answer is heavily based on where you live and your family's assets.  I know of several people who do get paid for the services they provide to their love one.  Some states require certification held by health aides or personal care workers, which I have heard are not difficult to pass.  So you'll have to do research to see where your state lies on payment for caregivers.


This article might be a good place to start as it has some good information on where to start looking.


http://www.ehow.com/how_5318454_paid-family-caregiving.html

[Jean]

Stringband Beth, here in Ca, you can nearly always be paid to be your spouses caregiver. In some cases even 24 hour care. Do you have a social worker? If so, get them going on info for you.

[stringbandbeth]

Thanks for the input...according to  our Davita social worker there is no way to get paid for this in CT. I know caregivers get paid in other states. My husband is  medicare primary and private secondary . I was hoping there was a federal program or something funded by a non-profit that could  help. Connecticut is the Insurance capitol of the world and has the highest out of pocket medical expenses in the country.
   Any one in the VA system out there? He is qualified for VA medical but we left that system 13 years ago after they gave him a living related transplant and forgot to test the donor for Hep. C.  Found out 1hr after the surgery because the donors Liver enzymes were elevated. He lost the graft due to the HCV and can not have another transplant. REALLY didn't want to go back there for care but maybe they can actually help. As long as we don't have to go there for dialysis.

[Kitty Cat]

I am also in CT and agree with you 100% about the lack of help as a caretaker. As my husband became even sicker, the insurance became a nightmare. Medicare 1st, primary 2nd but the doctor's offices & insurance kept confusing it as they went along. I still had bills coming in as of 2 months ago and he passed in October. I paid them because I'm tired of arguing. It's pretty sad that to do what you need to do, the help isn't there or very difficult to find.

I don't know if the kidney foundation may be able to give you some help or direction, but you may want to try them.

I wish you lots of luck

[The Noob]

if the patient is on medicaid as well, there are compensation programs. what it consists of is medicaid worker comes out several times and evaluates what patient can/cannot do, etc.
alot of paperwork. visits and red tape.

if they deem the patient needs help, they can cut a check to the patient, usually somewhere around 600$ a month, and the patient can then give that check to who they please.

this also must be claimed on tax return yearly.

we could not get any help as he doesn't qualify for medicaid unless he accepts a 1000$ spend down a month.

private insurance will pay for an aide a few hours a week but it very basic. help to dress, feed, light cleaning but nothing to do with even cleaning up used boxes, etc.
and nothing for caregiver.

NKF and anything local might help a little, and i say very little. they would pay for one drive to clinic a month if patient is in center, but then you give up the mileage check. even though its small, it does seem to help a little.

this is how money is saved. having a family member do it all. then they don't have to pay for help and no risk of lawsuits as it is a family member doing it.

your experience may vary.

my sister has a terminally ill child in FL. she gets one nurse 5 days a week for a few hours. she has to train them and she has been through MANY of them. the child has very medically complex issues and requires 24/7 advanced medical.

[stringbandbeth]

Still working on this...Bear and I do not qualify for medicade either. I am actually not insured at all. Lost it a few years ago and because I'm overweight (but very healthy with no health issues related to it) I was turned down by all the private insurance co.'s. I can only get approved for the high risk pool and it would cost $ 1800.00 a month. Thats $21,600.00 a year when my total medical expenses are maybe $2,000.00/ yr tops.......COME ON 2014 !
    I'm having a really hard time getting Bear to go back to the VA to try to get prescription benefits restarted. He doesn't even want to walk in the door but I think they have a few programs that could help get me a little compensation for the homecare. 
   I'd love to hear from anyone in the VA system. I know they don't have many home Dialysis patients but there must be a few.
              Wish me luck!