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913mommyof3

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Feb 11, 2011
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Country
US
State
Kansas
City
Osawatomie
Does anyone know if there is a way to get paid to take care of a pals by a spouse? I wanted to go back to work now that our twins are in Kindergarten, but I cannot leave my husband alone for long at a time. We are getting ready to make some modifications to our home. A power chair has been ordered for him, and we need to figure something out for an accessible vehicle too. I just don't know where the money is going to come from... We live in KS and have three children. Any suggestions?

Thank you!
 
I believe Kansas is one of the states that does provide some pay for caregivers. Someone on F B mentioned that the guy who won the Toyota Sponsify contest(Jeff H) has the State pay.
 
CJ, does this only apply to individuals who are eligible for medicaid? Our income is not great, but would the child support I receive for my eldest and the income I and the youngest two get for my husband being disabled count towards his income? I don't know if we are eligible for medicaid.
 
From what I understand, you have to be dirt poor to get medicaid.. We tried, but could not get it. Good Luck!
 
I'm assuming you've already gotten approved for medicare, correct? With ALS, there is no two year waiting period for medicare.

As for medicaid--all they can do is say "no". Can't hurt to apply. You might qualify for share of cost if nothing else. Most states let you apply online.
 
Joni, since you don't qualify for Medicaid, which we don't either, then you would need to set up an "Income Cap Trust/Miller Trust." You would need to consult an attorney for that. I don't know the details, as I haven't had time to look further into this.

Wendy, it looks like you are in one of the states that does not have an income cap. "Non-Income Cap States looks at the applicant's income and the cost of care. If an applicant cannot afford the cost of care, he or she will qualify." Contact your local Area Agency on Aging. They should be able to get the ball rolling for you!
 
Thank you! I will check into this asap! It's so difficult to understand all the lingo I'm reading online about everything. I think we should qualify for a lot more than we get, which is just medicare. My husband was covered under Medicare starting in March this year. We enrolled in a supplement plan and an rx plan also. I'm overwhelmed at the cost of wheelchair vehicles! Sure we could afford one if we didn't need to eat.LOL Oh well, I wanted to lose a few lbs anyway. :)
 
Hope your ALS Association rep is as good as ours, she knew all of the programs available. Through a state program that has spots set aside specifically for PALS, I get 50 hours a week home health care. We use it 8-6 Mon to Fri so Gina can work. They will pay a family member as caregiver, but they can't live with you. TTak w ith ALSA
 
Would this be the social worker at the alsa clinics? If so, ours is a joke. He called a few days before our last appt, then didn't remember anything we talked about over the phone. I wish he could offer us some helpful information. Nobody has ever mentioned this to us at the clinic, not the nurse, social worker, alsa nurse.

Do you get 50 hrs a week because you need help with basic things? I am worried that if my husband chooses to vent that I won't be able to ever sleep. Is the hours per week you get for caregiving based on how much help you need? I'm getting way ahead of myself. He isn't showing bulbar symptoms yet, but I imagine it will happen. Everything else has seemed to progress so quickly.
 
I talked with SRS today and they are sending me an application for HCBS-PD. Home and Community Based Services for Physically Disabled. KC2U2, is this the program I should be looking for?
 
sounds like it, ours is called Community Care, it is based on need, I also have no bulbar but need help with all the basic daily living tasks
 
Maybe I am on the right track then. I haven't called alsa. I would like to talk to them and ask why they haven't mentioned this before. I'll wait and see if this works, then I will make sure they pass this information on to others as I am sure it is something a lot of other people don't know about. I will post again when I find out more. Also, this is under medicaid, but they only count my husbands income for this and since he's married he can give the income to me and not have to pay for services. They will also pay for the part A & B premiums and maybe a portion of D, and cover Rx meds. This is if they have room in the program for us....
 
when you have the nurse and Ot come to the house for assessment be sure that you let them know he needs help with everything and don't sugar coat anything. In our situation they did an assessment for a year. Make sure they are projecting what your needs will be so you can avoid going through the process to get more time. If you have a job they will take into account your time away from home. If the kids have activities and cannot help this is also figured in. My kids are teenagers but because they have school, activities and jobs their ability to help with daily living is limited.
Every single need equals time. For example shaving, would you need to be shaved every day? Answer, yes, he wants a shave everyday. they will assign say 10 minutes everyday for shaving, 7 days a week. Meal prep, feeding, clean-up...all time. Bathroom, need an enema? Of course you do, everyday, more time. Need help going to doctors? yes. Doctors office is 25 minutes away.....you get the picture. Do you need to get to work before 6:00am? you might get night hours as well. How many transfers during the day? Everythiing is time.
 
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