I recently received this question:
- It doesn't seem from what I have read on your blog like you have nursing help, yet many disabled people qualify for a certain amount of free help from the state, right? It just seems like it must be a lot of work for your family, although I'm sure they don't mind.
So I thought I would make a post about my what sort of help I qualify for from the state, who cares for me and how we get by.
Because of the magnitude of my disability, I qualify to have a paid care attendant six hours a day, seven days a week. (Each state is different, but the maximum amount of hours you can qualify for in the state of Missouri is six hours a day, seven days a week.) Other people who are disabled, but maybe not as severely might qualify to have a paid care attendant for two or three hours a day; it really just depends on how much assistance that person needs. Each person undergoes an initial evaluation to assess how much assistance they need, and then they are awarded a certain amount of hours per day. *As I said, each state is different. Some states award far more the amount of hours that I qualify for, or even pay for 24-hour care. But here in Missouri, six hours per day is the maximum amount of hours people can qualify for, no matter the severity of their disability. I'm not sure the rhyme or reason to it all, I just know that it differs on a state-by-state basis.
I think it's unfortunate that the maximum number of hours my state awards is only six per day, especially for someone like me who needs care 24/7 since I physically can't do anything for myself. I AM quite self-sufficient and don't need someone sitting by my side every second of the day (like when I'm working on my computer) but I still can't ever be left alone and always need someone within earshot so that I can call them when I do need help. Six hours a day only covers 25% of the time, but I guess I won't complain and just be grateful for the six hours that I DO qualify for!
One fortunate thing is that I'm able to hire my own care attendants, and they can be friends or even my own family members. If I like you and feel comfortable with you, and if you pass a background check and are willing to do the work, then that's really all there is to it! Being able to "hire" my own attendants is what enables my mom to be able to stay at home with me since she earns enough money to where she feels like she doesn't need to work outside of the home to make ends meet.
Don't let me fool you, what the state is willing to pay personal care attendants each hour isn't much money at all (the starting pay is $7.50 an hour and after three months you get a "raise" to $8 an hour, and after a year your pay tops out at $8.50). That's shameful, if you ask me, and the state really should be willing to pay care attendants much more ESPECIALLY considering the fact that I have the option of being in a nursing home. That would be FAR more expensive than paying someone $8.50 an hour, six hours a day, seven days a week. It doesn't seem quite fair, but like I said earlier in the post, I'm just grateful for everything I do qualify for. Although I wish there was more assistance available, we're able to get by which I'm truly grateful for because I don't know how we would do it if we had to pay for private duty nursing care and personal care attendants out of our own pockets.
I think it's unfortunate that the maximum number of hours my state awards is only six per day, especially for someone like me who needs care 24/7 since I physically can't do anything for myself. I AM quite self-sufficient and don't need someone sitting by my side every second of the day (like when I'm working on my computer) but I still can't ever be left alone and always need someone within earshot so that I can call them when I do need help. Six hours a day only covers 25% of the time, but I guess I won't complain and just be grateful for the six hours that I DO qualify for!
One fortunate thing is that I'm able to hire my own care attendants, and they can be friends or even my own family members. If I like you and feel comfortable with you, and if you pass a background check and are willing to do the work, then that's really all there is to it! Being able to "hire" my own attendants is what enables my mom to be able to stay at home with me since she earns enough money to where she feels like she doesn't need to work outside of the home to make ends meet.
Don't let me fool you, what the state is willing to pay personal care attendants each hour isn't much money at all (the starting pay is $7.50 an hour and after three months you get a "raise" to $8 an hour, and after a year your pay tops out at $8.50). That's shameful, if you ask me, and the state really should be willing to pay care attendants much more ESPECIALLY considering the fact that I have the option of being in a nursing home. That would be FAR more expensive than paying someone $8.50 an hour, six hours a day, seven days a week. It doesn't seem quite fair, but like I said earlier in the post, I'm just grateful for everything I do qualify for. Although I wish there was more assistance available, we're able to get by which I'm truly grateful for because I don't know how we would do it if we had to pay for private duty nursing care and personal care attendants out of our own pockets.
When I started writing this post I asked my mom if she likes caring for me, or if she wishes that we had a staff of nurses and caregivers to be in charge of my care so that she had the freedom of doing her own thing whenever she wanted. She said that although it would be nice to have a little more help (especially in the case of if she gets sick or if she wants to take a trip to visit her parents or some of my other sisters), but for the most part everything is how we want it. Mom said that she loves caring for me and that she feels fortunate that she gets to spend her days with her best friend (a.k.a. me!). She also said that no one else would do as good of a job caring for me as she does, which I have to admit is very true! :) She knows my care far better than any licensed nurse or "professional" caregiver.
My mom said that her ideal situation would be to have all of her daughters live near us so that they could help shoulder the burden of my care. Unfortunately, most of my sisters live hundreds of miles away (my older sisters live in Texas, Mississippi, California and New York) so having them help is out of the question. It's too bad they don't live closer because it would be really nice if they could each help one day a week. The Lord obviously has a different plan for my mom and me, though, and that's okay because we're making it work one day at a time!
My mom said that her ideal situation would be to have all of her daughters live near us so that they could help shoulder the burden of my care. Unfortunately, most of my sisters live hundreds of miles away (my older sisters live in Texas, Mississippi, California and New York) so having them help is out of the question. It's too bad they don't live closer because it would be really nice if they could each help one day a week. The Lord obviously has a different plan for my mom and me, though, and that's okay because we're making it work one day at a time!
5 comments:
i LOVE having my son help as a care attendant for his PT income...plus I love the time together. That being said, I have24 hr. nursing...in MN. Please check again.6 hours? Shameful. I suppose they give you the option of a Care Facility, but who wants that when u can be at home. You just do whatever works for you! and your MOM!
Peace!
Sometimes I wonder if you worry what would happen to you if your mom got sick or old and could not take care of you anymore you do have a very strong faith which is admirable
I read Jenni Taylor's description of the level of care she gets (she is in Minnesota) and it's vastly more than you get - she has nurses round the clock PLUS a personal assistant. She still uses a ventilator though - did you get any more than you get now when you still used a vent?
Does the state provide more care than that to people who don't have their family to care for them but want to live independently? Or are they forced into a nursing home? I have heard some of those places are pretty grim.
This is very interesting information for me, please keep it up.
I must admit, I have a somewhat less-than-charitable opinion of your sisters. I do not wish to sound negative, especially since you are so positive. But I think they can and should do a bit more......
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