We looked into the option of going on Medicaid so to supplement my caregivers salaries. I currently pay $5,000.00 net a month for my live in RN & part time (p.t.) CNA. The 5K per month pays: mortgage, all utilities, food, the p.t. CNA and care for my son 15 day per month.

My RN has a 13 y.o. daughter who lives w/ us and has become my 4 y.o. son's big sister and sitter.

We met with a Medicaid rep last Friday and what we learnt came like a slap in the face. In order to qualify for Medicaid you must be put to a poverty level i.e.; $634.00 per month income. Any monthly income over $634.00 is forfeited to Medicaid. Plus, when the person dies Medicaid receives any assets in the name of the person.

To retain my current living arrangement I would have to qualify for 526.32 hours a month at an hourly rate of $9.50. (Medicaid's highest hourly rate) This is totally BULLS**T!!

In my case, I would have to forfeit my joint custody of my son and be forced into a nursing home at age 42.. I stated this fact to the Medicaid rep and she simply said, "we will try everything to prevent this." What a crock of S**T

How can a single parent survive and raise a child on $634.00 net per month?

If any members find my language offensive, I apologise and I'm sorry.

Jeff

Jeff...I know gov't healthcare coverage needs to be dramatically improved and I'm for one am certainly not offended...but please explore to see if there is a Medicaid "waiver" in your state..as you may be able to claim your medical needs as loss of income..Medicaid policies and restrictions vary state from state..as it is state regulated assistance.....before you give up get in touch with a hospital social worker...

I don't know what the going rate for is in your state..but at one time we had a live in caregiver that I paid $500 a week for round the clock care and room and board awhile back when Sandy was a baby after I was hospitalized for a ruptured appendicitis..... but they are no longer with us.......
It seems you really like the caregivers you have though ...we hired out of the paper instead of an agency...as often times the cost is dramatically reduced...as of now we have no live in caregivers as Gary is not single..but I pay $15 per hour..they are not RN's though..one is a CNA...one is med school student..and one is a paramedic...I hired three to rotate so they could cover for each other if one got ill..or quit..etc..but one at at a time works..and were trained with me on vent cares,,.so all of them know how to efficently perform all cares..Lisa

I'm probably speaking totally out of turn here Jeff..and I certainly don't mean to offend you or anyone else..
But$5,000 a month for live -in cares seems awful high to me...I know you like your caregivers alot..and your son has an almost sibling type of relationship with them...but I'm sure he cares much more about you..
Anyone can be trained to do the cares..with Gary's medical history I wanted someone at least somewhat experienced in the medical field .but I don't hire RN's..as day to day unless he needs to be in a hospital ..I really don't need that level of skill..
I have zero family in town ..no parents..siblings husband is military...he has no siblings to help..his mother is only surviving parent she's almost blind at 78 and has her own needs for care....but if I have an emergency a caregiver..will stay for $7.50 an hour if all they have to do is suction...at night I sleep..almost 8 hrs..only every now and again do I have to get up and suction when the vent alarms he coughed...
I have a lower back problem and do no heavy lifting..when I say our caregivers can literally do everything they can...iwhen I am very sick any of them can take over...
I absolutely agree though Medicare and Medicaid coverage needs to be expanded....Lisa

Lisa, her salary includes "ALL" overhead costs for our house.

Jeff, maybe I'm not understanding, but it sounds to me like you are curently able to pay $5,000/month expenses for the arrangement you have now. You must have some assets, although I'm sure they are rapidly depleting. Depending on how rapidly you're going through your savings, you may have to go on Medicaid at some point, but that shouldn't come until you've eaten through your assets. I'm not sure what you were expecting from medicaid--did you think they'd let you pass on an estate to your son while you took money from them for your living expenses? That doesn't seem fair to taxpayers.

It sounds like Medicaid is not the way you want to go--at least until you have to. Can you get at the equity in your house with a reverse mortgage, or even sell it to raise cash and move to a rental? Have you tapped all other outside sources of income--disability payments, social security, anything lying around in a safe deposit box and old IRA and retirement accounts? Do you have anything of value that you can sell--vehicles, boats, coin or gun collections, jewelry? I'm just throwing out ideas here, not sure what will work.

Let us know what happens. Good luck.

Jeff..I am just so sorry for your whole situation..
I'm just wondering though if you had someone with less of a medical background if they'd be willing to do it less expensively.. if they could be trained to do the cares...
It seems like you have a really close relationship with them..but your life is worthwhile my friend...
Pleaese try to explore every option thoroughly...a circle of friends, family, church...
I think trying to arrange cares before you vent will be a really smart move on your part..let people who are close to you know what you are thinking about doing..ask if they are willing to help...and specifically with what...
Maybe they can give you better advice than..I have so far...and lead you to better avenues to explore..
The person who helped the most with us was the hospital social worker..she applied for all types of things for Gary's care...and coordinated with his insurance companies for us...many things were turned down..but some things were covered it was all worth a shot..
Jeff,,hanging in there..you are thinking about this early which is good..it gives you more time to explore options....Lisa

How can a single parent survive and raise a child on $634.00 net per month?

not meaning no harm but welcome to the real world.

my live in rn and part time pt is my wife who work full time and comes home to me and my 2 kids well they are 17 and 22 both work and go to school, if i need becky i push a button on a cell phone and she comes a running home from her job.

$5,000.00 a month how many pals would like that income a month ? i would i would becky could stay home then.

our goverment is so screwed up it's a joke. i feel so bad for all the pals that really dont have a pot to **** in.
yes some do get some kind of govermant assistance but not much im sure.

yes we are the lucky ones we are online everyday not in a line, you know what i mean ?

online pals what % are we anyone know ?

boy im slow jeff everyone posted again befor i could post once.
and you did good jeff you got meg to post here.
welcome back meg.

I feel for all PALS regardless of income who's finances are depleted by this disease..
I'm sure many PALS would look at Hawking and think if only I had that much money..but he earned it...then there are PALS who are completely destitute who have nothing...and that makes us feel somewhat grateful...as regardless of their income before the disease..no one deserves to be abandoned by the system...it should never come down to I can't afford to survive any longer...
Some countries like Denmark provide alot more care ...and some provide much less..
But, I do feel more aid should come to PALS...both in the manner of research and the manner of healthcare...
We are not wealthy...but we were fortunate than many..and fortunate to have fairly extensive coverage for his needs..some PALS have much more..many have much less...
I pay for this highest level of care I can reasonably afford...in my husbands case..as he deserves the best I can give him...as I know he'd do the same for me...
I would like to see the day when all PALS receive the care they deserve...if it comes out of taxpayers pockets so be it in my opinion ..either society can pay for the cure or the care...how much do states spend on putting PALS in nursing homes on a vent once their finances are depleted?..wouldn't it be much cheaper to pay for cares inside the home..training of less medically qualified people...? I never minded paying taxes for those less fortunate before Gary had the disease and I sure don't now,,but I'd like to see those dollars go to better use...to keep PALS in their homes..
I do feel for you Jeff...as I do not know the pain of divorce.. nor of having the pain of losing abilities due to this disease...I could not imagine what you are going through as a single parent facing this disease..hang in there...Lisa

Meg1, Lisa and Bobby,

You all brought up valid points and please do not think I am not grateful for having a supportive family. I am also very grateful for having an employer who kept me on their payroll with medical insurance for over 3 years once they were told of my diagnoses. Please do not think for a millisecond I am not blessed and deeply appreciative.

My intention for starting this post was and is to inform other members who haven't faced the reality of what is ahead of them. In my meeting with the Medicaid representative I was blown away with what I was told, as many other PALS will be when they come to this crossroad in their battle with ALS. I know this is all secondhand information for veterans like yourselves. If I offended you, I humbly apologize.

Jeff