Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
The Microbe Discovery Project outlines an ambitious new study by top researchers that has collected patient samples, but needs desperately funds to complete the work.
Discuss the article on the Forums.

Does anyone use self directed care for caregivers/home health aides?

Discussion in 'Lifestyle Management' started by kwxt, Dec 9, 2015.

  1. kwxt

    kwxt

    Messages:
    2
    Likes:
    0
    I am trying to figure out a good plan for last minute coverage, and have a few questions for someone who has worked with self-directed care before

    Thanks!
     
  2. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

    Messages:
    4,665
    Likes:
    5,481
  3. KitCat

    KitCat be yourself. everyone else is already taken.

    Messages:
    222
    Likes:
    255
    US
    I use self-directed care through Medicaid for home caregivers.
     
    kwxt likes this.
  4. kwxt

    kwxt

    Messages:
    2
    Likes:
    0
    Hi! I posted this a while ago and definitely have smoothed my program out since then, but would still love to compare notes if you don't mind.

    I think we may be rarities. I've met very few people with cfs/me with home care at all, and fewer with self directed care.

    I'm currently struggling to get my insurance company to fit my needs into their assessment for hours (which doesn't take into account things like PEM). How have you dealt with this?

    How many hours do you receive? How do you schedule it out? What do you do about coverage when someone is ill?

    Thanks!
     
  5. KitCat

    KitCat be yourself. everyone else is already taken.

    Messages:
    222
    Likes:
    255
    US
    Hi kwxt,

    Thanks for posting. It is great to hear from you. Yes, one of my goals in life is to help more people with chronic illness learn about this program -- because it has really saved my life.

    I'm afraid I may not be very helpful here, because my state sounds different than yours.

    Is your program a medicaid waiver?

    What is PEM?

    My state started me at 25 hours/week, which I think is standard in my state. I was able to increase my hours by requesting "respite hours" -- you can only do this if you live in with someone who is an unpaid caretaker -- it is respite for that caretaker -- and it is 9 more hours per week. I was also told there might be a way to request more hours "if my condition gets worse" -- If I really needed more hours I might pursue this, but I am good with what I have.

    I would love to hear your experience - anything you can share -- I'm trying to learn as much as possible about how it works in different areas, so I can help others. How did you apply? What was the process? How many hours do you get? Anything you are willing to share :)

    I had to apply for this program twice. The first time I did not understand the assessment criteria. I know it is really different in each state though.

    If I were in your situation, I try would getting in touch with my casewoker or whoever did the original intake on me and say "I am curious how this program works. Can I ask you a few questions? How are the hours decided? Where can I see a copy of the manual or policy used for assessment and determining hours? What are the criteria for increasing hours?" It has been my experience that often a social worker or casewoker will be willing to point you in the right direction for finding a policy on something if you ask. If you can find anything out about the criteria I hope that might help you figure out how to get more hours. :)

    In my state, I would not ask the agency that collects timesheets and does payroll, they don't know anything about this kind of thing.

    I see many people with disabilities get caught in a trap when applying for things -- they just go straight into getting assessed without first figuring out what the rules and criteria are -- I see this happen a lot with people who are poor and have disabilities, they wind up losing money or services because they didn't know the rules. This happens all the time to people on SSI. :(

    How have you been handling scheduling? I live in the same house as my caretaker and and they are often around to work when needed so I'm not a good example of scheduling. Here's an idea that may not help you at all, but I'll just throw it out there..... Many years ago I worked for a training program with many trainers. At the beginning they gave us all of each other's contact info and said "If you are sick or want to change your schedule for any reason, it's your responsibility to find a replacement for your shift." I think if I were scheduling caretakers I might try something like this, create a list with all caretakers, including anyone I know who might be willing to volutenteer to take an emergency shift here and there.

    sorry, this got terribly long. I would love to know more about your experiences and how it has been going for you. This program really and truly saved my life, I don't know how I would have gotten by without it.
     
    taniaaust1 likes this.
  6. taniaaust1

    taniaaust1 Senior Member

    Messages:
    11,904
    Likes:
    12,727
    Sth Australia
    thanks kitkat for those questions as they are ones i need to ask as i keep being hit with being told its against my states disability service policy to give support for me/cfs but im yet to see how they are coming up with this in writing so i only get 5hrs suppport a week for aspergers.. and no extra time given when my state is such that i use a wheelchair when i leave house
     
  7. KitCat

    KitCat be yourself. everyone else is already taken.

    Messages:
    222
    Likes:
    255
    US
    Hi tania,

    I would love to see you get more hours than this!

    Do you know the name of the program you are in? Is it a medicaid waiver program? Some states have more than one kind of program, if you are not in a medicaid waiver program, you may be able to apply for that as well.

    I am not an expert, but I have never heard of a determination being made based on the type of diagnosis -- my impression is that it is made based on level of impairment. that is definitely true for the program I am in.

    Are you in washington state by any chance? I have heard stories from a few people there that were also given lower hours, but I don't know enough to understand why.

    If you want to let me know the name of your state and the name of the program you are in, I can try to see if I can find out if there are any other medicaid waiver programs there.

    Also, do you need any help with personal care (bathing, eating, dressing, bathroom, etc). I qualified based on personal care needs, but now that I am in the program I get help with everything else to (shopping, cooking, cleaning, etc). So, the trick may be figuring out how to qualify for personal care -- it is sometimes possible to do this even if you don't need personal care in every way all the time.
     
    Last edited: Apr 25, 2016
  8. KitCat

    KitCat be yourself. everyone else is already taken.

    Messages:
    222
    Likes:
    255
    US
    oh, my apologies. I just saw that you are in australia :)

    OK, I definitely don't know a thing about how it works there. Yes, I hope that you can get a copy of the policy and read it, and also maybe ask them if there are any other programs you can apply for if you need a higher level of care.

    In US this is sometimes the way to get into these programs: Ask for a screening for nursing home care. If you can pass that screening, then you say... great, but I don't want to go in a nursing home, give me self-directed care at home instead. Maybe you can ask if there is a program like that where you live?

    please keep in touch I'd love to know if you find anything out
     

See more popular forum discussions.

Share This Page