Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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How To Get Free Help In Your Home (bathing, eating, dressing, shopping, cooking, cleaning, etc)

Discussion in 'Finances, Work, and Disability' started by KitCat, May 13, 2016.

  1. KitCat

    KitCat be yourself. everyone else is already taken.

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    I am in a great program that gives people with disabilities and chronic illnesses help in their home with shopping, cleaning, cooking, doctor's appointments, eating, dressing, bathing, etc.

    This program has been really life-saving for me. I always want to share this info with other people who are disabled, since it has made such a difference in my life and I know most people do not know it exists.

    I am in the U.S. I don't know how this works in other countries. I just looked it up and see a similar program seems to exist in Canada, England, and the Netherlands. I also read a post by someone in a similar program in Australia. The article I am looking at says in Germany and Austria they just give you cash no-strings attached! This article is a few years old, though. I don't know where else this exists. I would be interested to hear from anyone in this program in other countries.

    Here is what I know about the US program. Please feel free to ask questions. I am not an expert, but happy to share what I know. Please let me know if anyone has any more information or suggestions to improve this post.

    If you are disabled and unable to care for yourself, this program will pay for someone to come help you in your home.

    WHO CAN I HIRE TO BE MY CAREGIVER: Medicaid will allow you to select and hire the person of your choice -- you can hire anyone you want.

    SOMEONE IS ALREADY HELPING ME: If someone is already helping care for you, then Medicaid will allow you to pay that person through this program. It can be someone you are living with, or someone who lives elsewhere.

    CAN I HIRE A FAMILY MEMBER: Yes. Medicaid will allow you to hire your sister, brother, daughter, son or other family member. If you are an adult, Medicaid will allow you to pay your mother or father who is serving as your caretaker. In most states, you cannot hire your spouse. In California there is a special program that allows you to hire your spouse. I don't know if this exists in other states.

    WHO PAYS THE SALARY: Medicaid does. The amount of hours vary. In many states it is 25-30 hours per week, but in some states it starts out at 5 hours per week.

    WHAT KIND OF HELP CAN I GET: The program is designed for people who need help with personal care (bathing, eating, dressing, bathroom, mobility) but once you are in the program you can also get help with many other things (shopping, cleaning, cooking, errands, medication reminders, transportation, doctor's appointments, etc.)

    I DON'T NEED HELP WITH PERSONAL CARE. CAN I GET OTHER KINDS OF HELP: Yes. There may be other programs you can apply for (but they may not be as wonderful as this program). See the bottom of this page.

    DO I NEED TO BE ON MEDICAID: No... or maybe. If you have too much money to get on medicaid, in some states you may still be able to get in this program. See below.

    DO I NEED TO BE ON SSI OR SSDI. No. You can get into this program any time. You can get into it while you are waiting for your decision on your disability case. If you are applying for disability, then the assessment paperwork from this program may be able to help your chances of being approved (but only if you collect the assessment paperwork and submit it to social security yourself -- if you don't do it yourself, social security will never see it).

    IS IT HARD TO APPLY FOR: No! If you have applied in the past for disability, you are going to love applying for this program! It is approximately a thousand times easier, and the people who run the program are very supportive, in my experience.

    HOW DO I KNOW IF I QUALIFY: The rules are different in every state. Medicaid will ask you and your doctor how much assistance you need with personal care. If you need assistance in all areas you will usually be eligible. If you need assistance in only some areas, you may or may not be eligible, depending on the state.

    HOW DO I EXPLAIN MY LIMITATIONS: The medicaid representatives I have spoken to have all recommended to try to think of what kind of help you need on your worst days when your symptoms are really bad.

    WHAT IF I ONLY NEED SOME HELP WITH PERSONAL CARE: In some states, Medicaid will allow you to qualify for this program even if you need only partial assistance in each area. It is very important to try to think of and explain any kind of assistance you need in each area, even if you are able to do some things on your own. For example, if you are able to dress yourself most of the way, but you are unable to bend down and put on shoes or pants, this may qualify as needing assistance with dressing. Or if you are able to brush your teeth some days, but on other days you need assistance to do this, this may qualify as needing assistance with bathing. Or if you are able to get to the bathroom most of the time, but sometimes need a bedpan or pee jar, this may qualify as needing assistance with bathroom care. Or if you are able to walk on your own, but need assistance to stand up out of bed, this may qualify as needing assistance with mobility. Or if you can sometimes eat on your own, but other times have difficulty holding glasses or silverware, this may qualify as needing assistance with eating.

    WHAT IS THE PROGRAM: The program is called a medicaid waiver for care for people who are disabled or elderly, but it goes by different names in different states. You do not need to be a senior, you can be any age. This program is designed as a nursing home diversion. It is designed to keep people out of nursing homes and allow them to stay in their own homes.

    FINANCIAL REQUIREMENTS: The rules are different in every state. In some states the requirements are the same as Medicaid, in some states you can have more money and still qualify. In some states you can have income of $2,200/month and still qualify.

    I HAVE TOO MUCH MONEY CAN I SPEND IT: Medicaid will allow you to buy a home or pay down your mortgage or buy a car -- you can own one car and one home. Medicaid will also allow you to spend your money in any way you wish for yourself, as long as you don't buy something with a significant value. If you own a home, please look into the rules for medicaid estate recovery.

    I HAVE TOO MUCH MONEY CAN I GIVE IT AWAY: In most cases, if you give your money away, you will have to wait up to five years before you are eligible for medicaid waivers. There are two exceptions: Medicaid will also allow you to give money to your disabled child. In some states you may give some money to your spouse. Some states allow a spouse to keep $120,000.

    I HAVE TOO MUCH MONEY CAN I PUT IT IN A TRUST: In most cases, if you put your money in a trust, you will still be able to keep your money for yourself, but you may have to wait up to five years before you are eligible for a medicaid waiver. If you are planning ahead, this can be a smart thing to do. These kinds of trusts are called pooled trusts or special needs trusts.

    I HAVE TOO MUCH INCOME: In some states you can spend part of your income on your home care or medical care, and then qualify. This is called a "medicaid spend down." In other states you can put your income in a Miller Trust or Qualifying Trust and then you can apply.

    TO APPLY - Medicaid Waiver programs can sometimes be tricky to find. They have different names in every state, and they are often changing. Try calling your local Adult Protective Services Department. Also, try calling your state agency on aging (even if you are young). If neither of those things work, try calling your local medicaid office and asking which agency oversees screening for "long term care services." You can learn more about services in your state here: https:// www.payingforseniorcare.com/ medicaid-waivers/home- care.html#title5

    WATCH OUT - They may put you in a program that is not a medicaid waiver, or there may be more than one waiver program in your state. If you are put in a program where you are given very few hours, you can inquire about what other medicaid waivers are available. You can also ask if you can apply for "respite care" or if there is another way to request increased hours. If you are put in a program where they do not allow you to choose your own caregiver, you can request to be in a program where you can choose. This is sometimes called "consumer-directed care" or "participant-directed care." Some programs have waiting lists and some don't -- sometimes people start out in one program while they are waiting on the waiting list for a better one.

    WHAT OTHER KINDS OF HELP CAN I GET:

    1. If you need help in your house (shopping, cleaning, etc) but you don't need personal care, you won't qualify for a medicaid waiver. However in some areas you may be able to get into a simpler program that provides just household assistance. This kind of simpler program will be less hours and it probably won't let you choose your own home aide (they will just send someone from an agency). Also, it is not available in some places. To see what is available in your area, try calling your local Adult Protective Services Department. Also, try calling your state agency on aging -- even if you are young, still call here. It is best to call both places because different services may be available.

    2. If you have a psychiatric condition, you may be able to get in a different medicaid program that provides mental health specialists. This person comes to your home and offers you support. They can also accompany you to your doctors or other life activities. They can help you meet your goals (whatever your goal is - a job, a class, a new skill, go to a new doctor, manage paperwork, feel less lonely, make friends, leave the house, etc). This service is called different things in different states and I am not certain if it is available in all areas. Try contacting behavioral health agencies in your area and asking how you can get mental health support in your home. You may have to contact several agencies before you find one that offers this service.
     
    Last edited: May 14, 2016
    Sancar, -Jessie-, actup and 5 others like this.
  2. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    Ah, our good old US of A.
     
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  3. Gingergrrl

    Gingergrrl Senior Member

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    Is this IHSS or a different program?
     
  4. KitCat

    KitCat be yourself. everyone else is already taken.

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    Hi ginger,

    I believe ihss is the program in California. It is called different things in different states.
     
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  5. KitCat

    KitCat be yourself. everyone else is already taken.

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    I just updated the post above to include some more info on how to qualify for medicaid waivers even if you have too much money
     
    Little Bluestem likes this.
  6. KitCat

    KitCat be yourself. everyone else is already taken.

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    Little Bluestem likes this.
  7. taniaaust1

    taniaaust1 Senior Member

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    it really depends on what state of Australia you are in, where I are in Sth Australia our states disability service does not at all recognise ME/cfs as a disability (Im currently taking them to court due to this and their discrimation for not providing any services to those who have ME/cfs in our state). I only get some services eg help to take me shopping cause I have minor Aspergers which they do recognise as being a disability). They wont recognise even those in wheelchairs due to ME/CFS or POTS as having a disability.

    If someone is over 55 years though, they may qualify under services for the aged which give services sometimes 10 years earlier in some situations where a person isnt well or disabled. I would of been able to get some services from council had I been 55 years or older.

    ME/CFS doesnt here doesnt qualify for extra support here on mental health grounds either.
     
    Last edited: Jun 23, 2016
    actup and KitCat like this.
  8. KitCat

    KitCat be yourself. everyone else is already taken.

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    Thank you so much for letting me know. I will update what I wrote about austrailia.

    that is terrible that they won't recognize your illness.

    My understanding in the US is that it doesn't matter what your diagnosis is.... it just matters what your level of functioning is. I could be wrong, but i believe that is what is true in my state.

    I am glad you are able to get some help at least, but I wish it were more :(
     
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  9. KitCat

    KitCat be yourself. everyone else is already taken.

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  10. taniaaust1

    taniaaust1 Senior Member

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    It's supposed to be like that here too eg their website says our states disability services provides support of those which neurological and psychological etc illnesses but they are just so biased towards those with these disabilities that they actually sent me a letter saying they do not give support for ME/cfs and dont classify it as a disability.

    I suppose that some states of America are likely to have same kind of issue where top people in certain states who make the rules dont believe in this illness or what it comes under.
     
  11. taniaaust1

    taniaaust1 Senior Member

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    thanks, i havent read that before.

    I dont fit into any of their defined special needs groups eg rejected by disability service and dont fit into mental health group of services. They've said ME/Cfs is an "illness" and not disability and hence say hospital should be following up with what services they have..but the hospital themselves claim it is a disability so say I come under the disability services (and then local council couldnt help me either due to my age and also cause they dont take on people who are disability services clients which I are due to the aspergers).

    I had good medical support that I need extra support but my doctors letters (2 cfs specialists, one physio and my gp all did letters or phoned) applying for extra services for me and I still got all knocked back due to each service saying it doesnt deal with ME/cfs support. I have got a home care package I guess throu what i get now with the aspergers (i have an support agency service provider) but it doesnt cover the ME/cfs at all and issues around this so im given very little support (i just get my dishes done once a week and taken shopping. I cant get to any of my medical appointments etc etc even with the doctors letters saying i needed support to do that).

    Im not sure thou if the aged care assessement team carries any more power then 3 doctors and specialists backing me did, Im going to phone them thou and talk to them. Our own health minister here doesnt even know which service deals with ME/CFS and has been investigating this now for about 3 months to try to find out.

    "However, this should only occur where there are no other care facilities or care services more appropriate to meet your needs. "

    the appropriate service for me to be coming under is the state disability service cause ME/CFS does fit their criteria eg neurological disability but they wont do it. I already have a service provider who could do the services if granted permission too by higher authority.
     
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  12. KitCat

    KitCat be yourself. everyone else is already taken.

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    @taniaaust1

    I would love to see you get into this program so you can get the care you need. I can try to help you with it - I have helped some people in the US. I don't know austrialia... it looks similar to me.

    In the US, applying for homecare is totally different than applying for disability. I know these homecare programs are designed for people who need a high level of care... I don't know if that is your situation.

    I am glad you are going to call them :)

    I wish I knew more about austrailia but I am very happy you will at least call and see what they say.

    If you are able, please take a look at everything I wrote here about how to answer personal care questions.

    http://forums.phoenixrising.me/inde...-dressing-shopping-cooking-cleaning-etc.1958/

    In the US, that is extremely important. The way you answer these questions is the KEY to qualifying. I suspect it may be similar in austrailia from the look of this website.

    feel free to pm me or post here if you want to chat more
     
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  13. taniaaust1

    taniaaust1 Senior Member

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    ummm http://www.myagedcare.gov.au/help-home/social-support-and-activities

    if only. I missed the small funeral of someone who was like a father to me cause I had no support to help me get there and support me there. I would love to go to the outside carols by candlelight at xmas each year but never get to go due to no support. By these packages it sounds like they are supposed to give social support too. (I dont even get my basic care needs met let alone any support to go to say a ME support group close by or anything else social or important to me).

    I did get offered a social support service I was going to use to get take me places I needed to go eg medical appointments (I would of paid for fuel etc) or i would of liked to have used it for a ME/cfs support group outting but I got told they couldnt do that and if I used them it had to be a a regular ongoing thing eg weekly (which would be way to much, such a service I could only use occassionally.

    Im down to bare essentials due to my housebound status and have not enough health just for weekly social visits with someone I dont know, I'd rather have social support to be helped to reconnect to an old friend who lives nearby who I never see or to have some social important things eg be able to get to an important to me funeral.
     
  14. taniaaust1

    taniaaust1 Senior Member

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    yes i know, Im already on a disability pension for ME/cfs so have that. Its the home care stuff and carer stuff I need which I havent been able to get due to biased here. (I had biased too around getting my disabiliity pension and in end my case was heard in another australian state to get it at third appeal level).


    its not the way questions have been answered but its their policies against ME/CFS which they say they arent to support. They've said they are forcing me too try to be independant eg obviously they believe those with ME/CFS can just push themselves**sigh** even with my doctors trying to explain it to them that Im sick and need the support. They even ignored a phone call from the hospital telling them I need more support. They ignore that i keep ending up in hospital.

    It doesnt matter what I say or my medical team says, they just arent willing to believe this illness is a real problem we cant push throu. My doctors have at times specified certain types of help I need but that is ignored. One of my doctors even said in a letter I can only walk FIVE steps.. and instead they called a lier as at times I can walk more. So it basically doesnt matter how bad its put, they wont do it due to the name of our illness.

    when the physio rang them shocked that i wasnt getting more support, she spent a whole hour trying to explain ME to them without any luck. Even someone from our states ME/cfs society rang them to try to help them understand and they ignored her too. Over several years they've had countless people do letters to them and phone over me and my situation, even my neighbour has. They've also been sent a lot of stuff in writing too about this illness.

    This department who doesnt beleive ME/cfs is a disability and seems to have a complete disbelief in our illness even went then and made up things about me and started saying they see me out walking around at the shops with a friend all the time..they said this to me (which isnt true, im incapable of this and are homebound unless i got someone to push my wheelchair). I assume they have told other depts this as not long after i found others turning against me and making strange comments.
     
    Last edited: Jun 23, 2016
  15. KitCat

    KitCat be yourself. everyone else is already taken.

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    I would love to see you have more support and visits. I could not tell from this part of the website if this service was for seniors or any age.

    In the US, the key to qualifying for this program is personal care. Other types of services (like social support) can come later, but you can't qualify based on those needs, you need to qualify based on personal care, and then once you are in the program you can get those other things.
     
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  16. KitCat

    KitCat be yourself. everyone else is already taken.

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    Oh, you are already on disability! I didn't realize that is super!!

    This is all so frustrating to hear. I am so much hoping that this program will be different.
     
  17. taniaaust1

    taniaaust1 Senior Member

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    over here that is is bad advice.

    That's what i originally did and it really made things worst as they then if you have someone to help, tell you you do not need the services. They were pushing me to get my neighbours to help etc. My mums boyfriend (they live 7hrs away) came and mowed my lawn once after it was over my head height in weeds (a hacket has had to be used on it) and they then for over the next year were using that as a reason not to give me any more support.

    I have a very elderly friend in his 70s or 80s who helps me at times when he isnt interstate or when he can get away (he can only visit me when his wife thinks he's out shopping). They used the fact that he helps me at times also as a reason not to give me support services as "you have some help".

    If you have any help at all, be it a neighbour you speak to or whatever, they tell you to get your help from that person and then deny you services. My disabled mother cant get any support services though she cant even do up her own buttons etc (she's got very bad wrists so is on disability for that).. she cant get support services as they deem she has someone who can help her at times. her boyfriend is a trucker so is often away and she struggles to even dress herself.
     
  18. taniaaust1

    taniaaust1 Senior Member

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    thanks that aged service may be helpful :) , it took much explaining to them eg she just told me that their site (myagedcare) is just general info and they themselves dont help those under 65 but refer younger people on to other agencies to deal with and tried to then refer me to the very agency (the state disability service) who is ignoring this illness as this was the one she believed I'd come under.

    after me saying im actually in the process of taking that very agency to court over discrimination of this illness as they wont give me support for the illness, only then did she say they (that aged place) may be able to help me.

    for anyone else needing this info, this is australia wide and the referal form is at https://www.myagedcare.gov.au/referral . She finally told me to fill that in and fax with it (fax number is 1800 728 174) info confirming my illness from my doctors (she said past info is okay if I cant currently get to doctors).

    I've currently got no idea where the doctors Ietters I need are (all my paperwork and medical info is a huge mess) so will have to follow throu with this at some other time.

    thanks again.
     
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  19. KitCat

    KitCat be yourself. everyone else is already taken.

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    thank you for telling me this!

    I know that is true in a few states here, but not all. I have seen this written in some of the guidelines, they look at what help you needed in the past seven days and that is how they determine your need.

    This is very confusing. This really seems like a trick question.
     
  20. KitCat

    KitCat be yourself. everyone else is already taken.

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    you already called? You are so awesome!

    You did a great job of advocating for yourself in this call. that is super!!!

    I am going to pm you
     

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