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Sep 14, 2007
Learn about ALS
I have a good friend with ALS. He is 39 married with 2 children, ages 7 and 4. His wife is required to work full time outside of the home to provide for their financial needs. He is on disability and medicare. He has muscle loss in his arms and legs and very limited use of his hands. She has been told at this time he does not qualify for an assistance with the cost of a home health provider. She does not want to try to get medicaid. outside of that option does anyone know if there is any assistance for non-medical in home assistance. He does need 24 hours care but he is not done fighting this dread disease and is not ready for hospice care. We are in Kentucky and have checked with our local ALS chapter and they are not aware of any help outside of hiring a private service to help out. Any suggestions would be greatly appreciated. tmarie

Does anyone close belomg to an organization like a church, The Moose, K of C. etc. What about a university volunteer system. There is a thing called Service Learning or community service where med students AT, OT etc might need experence and volunteer their time. Whern my sister needed care we set up a claendat with as many people as possible to volunteer for two hours or so shifts, covering the most needed times. How about her work, is there such a thing as the company supporting volunteer work in the community that they might help. Hope this helps. Peg
We do have a lot of support from church members with meals, etc. The problem is he is not comfortable with these people helping with showers. She is having to get up every morning and shower him before getting the 7 year old ready for school and then heading off to work for 8 hours. She has hired an agency to come one afternoon a week for now. They start next week. The cost is $17.25 in hour with 3 hour miminum. We are working on raising funds to cover the costs. I was just wondering if there are any organizations who will help out on a non fee or low fee basis. Thanks

I'm very sorry your friend has ALS. I have been researching this very problem. My husband is not at that stage yet, and I have had to return to work in order to buy insurance and try to maintain our standard of living. Therefore, I know down the road this issue will come up.

Does your friend have a PEG (feeding tube), or require any other medical intervention that could be cared for by skilled nursing? It is my understanding that if the patient requires skilled nursing care they would also qualify for unskilled care for activities of daily living.

Has she contacted the Kentucky Area Agency on Aging? I know they mainly help seniors, but they may be able to provide helpful information. Also, maybe contact this agency:

Also go to a site for Q & A about medicare (you have to register) but it is real informative:

Found the following info at this site:

"Some agencies have a sliding fee schedule for those individuals without insurance coverage. Also some home health providers participate as a "Kentucky Fair Share Provider" as part of a voluntary network through which they provide limited services to individuals who are without financial resources, have no insurance, are not eligible for Medicaid or Medicare and have non-emergency health care needs. A physician participating in the Kentucky Physician Care Program may refer someone to home health through this network. The hotline number for accessing the "Kentucky Fair Share" Program is 800-633-8100."

This is really a terrible situation, especially with children involved. You are a good friend to be looking for help.

If all else fails, call you local state representative's office for assistance in uncovering possible benefits.

Please let us know about the situation and whether or not y'all were able to obtain help!
Hi tmarie- I wonder why your friend does not want to go on Medicaide? We've been told that a DX fo ALS is grounds for automatic qualification. Also, in many states Hospice will come in and provide assistance with daily needs for up to a year, which can then be extended as long as the patient does not get better. (Not likely with ALS.) Our Hospice says they woud rather get involved sooner, since a lot of what they do is appropriate for those who are aware and alert. cindy
He does not have a feeding tube yet. We have been told once hospice comes in medicare will not cover the cost of any devices that may inprove his quality of life. We would hate for a new drug or other product to come along and him not be able to get it because of his hospices status. That could end up costing more than private duty care. He is not finish fighting this thing yet and we are daily praying for a miracle! thanks, tmarie

Medicaid comes into play when you have no almost no monetary means. I think what the CALS is reluctant to do is give up her job and insurance for the kids and herself. Medicaid would look at her income and declare a no go.

Hospice rules vary from state to state.
home health care - and a hello to all old friends

hello old friends and new members. i have not been on here in several weeks. my husband, horace, was given only a 'few more months' to live back in may. however, he is not only still with me, he is 'holding his own'. he did have a feeding tube inserted at a local hosp. last week only bec. his breathing problems required it to be done now so the drs. could put him under anesthesia. we elected the 'light sleep' they use in a colonoscopy and he came through fine. he can eat and swallow fine still, but it is there when needed, and we will clean it and bandage it up every day from now on. the bandage and tape will be provided from now on out by home health care. you keep them covered bec. you don't want them flopping around, getting dirty or hung up on anything. he is still sore, but doing great. thanks for all your encouragement and prayers.

we do not qualify here in TN for hospice bec. we don't meet their requirements; i.e., he can still feed himself and is not bedfast. however we do qualify for home health . he gets an aide to come help with his shower 3x a week, and a rn comes once a week.

medicare pays for all this, and medicare pays a medical equip. company to bring out oxygen, bipap machine, and everything we need.

we get medicare only bec. we are both over 65. but please, please, please reconsider medicaide if you are nowhere near 65. it is no disgrace to 'need' help. i think everyone in this group of wonderful friends will agree. please apply immediately and get immed. help.


Glad to hear you husband is still holding his own!

So because your husband requires bipap, etc, medicare also pays for an aide to help with personal care right?
Jackie-so good to hear from you and good to know hubby (Horace?) is doing OK. I keep promising myself that I will learn this insurance thing and so I will-any day now! :-D Here's a question: does anybody know if a person on SSI Disability can get medicaide insurance regardless of famiy income? If so, a wife would still need to work to get insurance for herself and the children, but the patient could maybe be covered? I admit my knowlege of all this is fuzzy at best! Cindy
Cindy, unfortunately the government looks at the income of the wife and the husband. In order to qualify for Medicaid the family would basically have to have very, very limited assets and very, very limited income. The PALS would qualify for the Medicaid in that case, as would the family. But I doubt they'd have much to live on to support a family. My husband even suggested getting a divorce, so when I got a job my income would not count so he could go on Medicaid. But he still makes too much with private disability insurance plus SS Disability. Therefore most families are stuck. They make just enough to disqualify themselves from needed benefits and not enough to pay for insurance, etc for the rest of the family, let alone pay the mortgage and utilities. Thus the need for one spouse to work. (We're talking about younger PALS/CALS with children) It's just another thing for PALS to have to struggle with.

This can be absolutely overwhelming when a PALS is first diagnosed! It's like you are sinking in quick sand and you can't seem to find a way out. I'm still not sure what's going to happen with our family later down the road. That's why I am researching every single thing I can find so I can plan for the future. And if I can help any other family in the same predicament, I'm more than happy to.

At least now I have gotten over the feeling of helplessness and am trying to deal with this very unfair disease.
Hi tmarie,
If your friend is considering hospice, and would qualify, she could always revoke her hospice benefit if her husband wants to try a treatment to improve quality of life. This does not mean they could not get hospice again at a later date. However, hospice does not provide 24 hour care. Your friends husband would have to be evaluated as to how many times hospice feels he would need a nursing visit (normally 2-3 times a week) and they would provide a home health aide that will come to the house - again, normally, 2-3 times a week for 1-2 hours. I believe all hospices are available 24 hours a day - for emergent care, which means a nurse may be called at any time of day, or night, and be available to make a visit.

Most private home health agencies do charge, but are available for 24 hour care. This is such a horrible disease, and with young children in the home, just makes for even more difficult decisions to be made.
home health care

someone asked if medicare paid for my husband's home health care just bec. of his bipap. he qualified for home health soley due his dr's ordering it; but the bipap was considered i am sure. now, home health tells us that medicare will pay for the gauze and tape for every day's covering of his peg tube.

everyone should talk to their primary care or als dr. to see what they qualify for.

The regulations for MEDICAID vary by state so an investigation into KY is something you should look into. There was a lively discussion on this topic on another site, that I have been forbidden to mention by AL and David. Please private message for details.

First, I'd like to suggest that you interview estate planners in your area. It was little effort but I was able to find a lawyer in our area (Denver) that specializes in this type of planning.

Secone, I have been playing with the numbers on this subject for quite a while. Almost every sort of optimistic outcome for my ALS survival ends up costing me all of the retirement funds that I socked away for the last 20 years. (I'm 41) My conclusion was that if you happen to live long enough; you will require home care assitance. Since Medicare doesn't pay for this, except associated with another medical reason, you will be spending about $6K per month worst case. Medicaid does cover this care but you need to bankrupt yourself.

In Colorado
ASSETS: Medicaid allows $100K spouse, $2K recipient, one house valued up to $500K, one car (no limit oddly on value) Assets include all retirement money. The only thing i found that didn't count was a UGTA account.

INCOME: Spouse (no limit on income) Gotta watch that $100K which includes retirement funds
Recipeint ($5300/month)

Here is where retirement money is going to be spent:
Pay off my house
Buy expensive and (resellable) wheelchair van. Like the Honda ($50K)
Remodel my house to be absolutely perfect, fabulous vacations etc.

Here is the way to transform an asset into an income. Purchase a Single Premium Immediate annuity. (SPIA) This type of annuity provides an income stream. Medicaid must be listed as a beneficiary but you can list them after your spouse and children.

By my calculations, the income from my disability and the annuity will not exceed the maximum but what if it did? You can create a Miller trust that takes that money and puts into an account for Medicaid to take when you die. Medicaid will certainly get some of your money but not all of it. Any income from an SPIA cannot be claimed by Medicaid while there are other living beneficiaries. So, your spouse and children can receive income from the SPIA until they die or the SPIA term is up.

After my death, whenever that is, my spouse will continue to recieve income from my SPIAs but will need to start over again on building a retirement next egg.

I don't know who you would need to talk to (lawyer), but a family I know got divorced so that she would qualify for medicare. I don't know if they list the same address or her husband "lives" with a family member.

There is an agency called "Passport" that might help. Not sure of information
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