How to Get Help from State Home Care & Caregiver Programs

How to Get Help from State Home Care & Caregiver Programs

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If you are unable to care for yourself, all states have programs that will pay for someone to be a caregiver in your home. These programs are designed to keep people out of nursing homes and in their communities.

These programs gives people with disabilities and chronic illnesses free help in their home with personal care (eating, bathing, dressing, mobility). Many programs also provide household help (shopping, cleaning, cooking, doctor's appointments).

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[/fright]This program is especially amazingly great because you can choose your own caregiver. You can choose a friend, a loved one, a family member, or someone else. These programs are often called "self-directed care" or "consumer-directed care" or "participant-directed care." If you are a Veteran they are called "veteran-directed care"

These home care programs also save the government money. They keep people out of nursing homes and provide care at a much lower cost.


If you know other people who are homebound, bedridden or unable to care for themselves, please share this with them.


HOME CARE AROUND THE WORLD

This article is mostly geared towards the US. However, it appears that similar programs exist in other countries. These programs are often called self-directed home care. Here are a few leads. If anyone has any experiences with these programs or other homecare programs in other countries, please share your story below.
Here are two tips: Ignore if it says the program is for seniors. Call them anyway! Sometimes they will take younger people with disabilities. Also, pay a lot of attention to the personal care questions. Please read he section below on personal care. This appears to be similar in many areas.


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STATE HOME CARE


If you are unable to care for yourself, all states have programs that will pay for someone to be a caregiver in your home. These programs are designed to keep people out of nursing homes and in their communities.

These programs are called different things in different states. In some areas they are called "Medicaid Waiver" or "Medicaid Long Term Care" or "Elderly or Disabled Waivers."

For people who are poor, there is no cost for this program. If you have too much money, some states offer a spend down option, where you can pay for part and the state will pay the rest.

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WHO WILL BE MY CAREGIVER?

Most state programs have a self-directed care option. In self-directed home care programs, you are allowed to select the caregiver of your choice -- you can select anyone you want.
  • What if Someone is Already Helping Me? If someone is already your caregiver, then state can pay that person. It can be someone you are living with, or someone who lives elsewhere.
  • Can My Caregiver Be a Family Member? Yes. The state will pay a family members who is caring for you. It can be your sister, brother, parent, child or other family member. However, in many states, it cannot be a spouse.
  • Can My Caregiver Be My Husband or Wife? In many states, you cannot hire a spouse, but in some states you can. The rules are always changing so please check back. In 2016, you can hire a spouse in California, Florida, Colorado, Montana, North Dakota, Oregon, Texas and Vermont.
  • Does My Caregiver Live with Me? That is up to you. When choosing your caregiver, the state will allow you to select someone you are already living with, or someone who lives somewhere else.
  • Does My Caregiver Need a License or Training? Most states do not require any special training. Some states will arrange for your caregiver to attend a training in topics such as first aid and CPR.
  • Who Pays My Caregiver's Salary? The states does. It is often $9 - $12 per hour.

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WHAT WILL MY CAREGIVER DO?


Your caregiver can provide assistance with personal care (bathing, eating, dressing, bathroom, mobility). Many programs will also provide help with other things (shopping, cleaning, cooking, laundry, errands, medication reminders, transportation to doctor's appointments, etc.)
  • How Many Hours Can a Caregiver Give? The amount of hours vary. In many states Medicaid will pay for 25-30 hours per week, but in some states it starts out at 5 hours per week, and in some states it is as high as 75. If you are not given the hours you need, you may be able to request additional hours if your condition worsens.
  • What days and times will my Caregiver work? That is up to you and your caregiver.
  • Can My Caregiver Help My Family? No. The assistance must be for you only. The caregiver cannot get paid through the state to take care of your children or to cook, shop and clean for other people you live with.
  • Can My Caregiver Shop for Me and Drive Me Places? It depends on who you choose to be your caregiver, if they have a car, if you have a car, and what kind of agreement you make with your caregiver. You may consider offering to reimbursing milage if you can afford this. The federal milage rate is 54 cents per mile.

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AM I ELIGIBLE?


The purpose of this program is to keep people out of nursing homes and it is designed for people who have a "nursing-home level" of need. The rules are different in every state and some states have more than one home care program.
  • Do I Need to Be on Disability to Apply? No. In most states you do not need to be on disability.
  • Do I Need To Be Poor to Apply? Maybe. Maybe not. The rules are different in every state. See below.
  • Do I Need to Be on Medicaid to Apply? No. These programs are usually funded through Medicaid but you do not need to be on Medicaid to apply. The rules are different, and you may be able to qualify even if you were turned down for Medicaid or have too much money for Medicaid in your state.
  • What Is the Program Called? It is called different things in different states. In some areas it is called "Medicaid Waiver" or "Medicaid Long Term Care" or "Elderly or Disabled Waivers."
  • Do I Need To Have a Severe Condition to Apply? Yes. Most of these programs are designed for people with "nursing home level" need. If your needs are not that great, you might instead try seeing if your area has a simpler program that provides home aides or household help. Home aide programs will be less hours and are not available in all areas.
  • What If I Only Need Part-time Help? Perfect! This program is designed for people who need part time help. It does not provide 24 hour care.
  • What if I Mostly Need Household Help (Shopping, Cooking, and Cleaning)? It depends on the program in your state. In some states, you may be able to use most of your hours for household help. For example, you might use 5 hours per week of personal care, and 15 hours per week of household help.
  • What if I ONLY Need Household Help? If you do not need any personal care, you probably won't be eligible for this program. You might instead try seeing if your area has a simpler program that provides home aides or household help. Home aide programs will be less hours and are not available in all areas. Most home aide programs will send a caregiver from an agency.

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HOW TO APPLY


If you have applied in the past for disability, you are going to love applying for this program. Most people report that workers in these programs are much more supportive and believe you if you tell them you are sick.
  • The Interview - The process is different in every state. They will usually do an interview with you to ask you about your needs. This can happen over the phone, or they can come to your house. They will ask you a lot of questions about what kind of help you need
  • The Doctor Form - They may send a form for to your doctor to sign. Or they will give you the form to bring to your doctor.
  • The Financial Form - They will give you a form to fill out about your finances. If you are already on Medicaid, you can usually skip this step. Some states will allow you to join this program even if you have too much money for Medicaid. See below.
  • The Waiting List - Some states have waiting lists and some do not. The wait time varies greatly

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PERSONAL CARE QUESTIONS

These are the most important questions in the interview. They are also the hardest to answer! Many people get too shy or embarrassed and get denied from the program because they were not able to talk about personal care. Even if it is really hard, please try to be honest about all your personal care needs. It is uncomfortable but it is worth doing if it will get you the help you need.

When answering these questions, it is very important to be honest and explain your full situation. Some medicaid workers and Social Workers recommend answer these questions by describing the kind of help you need on your worst days.
  • Do you need help with dressing? - When answering this question, be sure to explain any ways and times you may need any kind of help in this area. For example, if you are able to dress yourself in some of the way, but you are unable to bend down and put on shoes or pants, or unable to manage buttons or zippers. Dressing must be help with physical dressing (laundry doesn't count).
  • Do you need help with bathing? - When answering this question, be sure to explain any ways and times you may need any kind of help in this area. For example, if you are able to wash yourself in some ways, but need to be monitored or helped into the bath because you have a history of falling. Brushing your teeth and washing your face also count as bathing.
  • Do you need help with bathroom / toilet? - When answering this question, be sure to explain any ways and times you may need any kind of help in this area. For example, if you are able to get to the bathroom most of the time, but you sometimes need assistance to stand up after, or you sometimes use a bedpan or pee jar and need assistance with this, this may qualify as needing assistance with bathroom.
  • Do you need help with walking or mobility? - When answering this question, be sure to explain any ways and times you may need any kind of help in this area. For example, if you are able to walk on your own, but need assistance to stand up out of bed. Mobility must be assistance standing up or walking or pushing a wheelchair inside your house (help outside doesn't count).
  • Do you need help with eating? - When answering this question, be sure to explain any times you may need any kind of help in this area. For example, if you can sometimes eat on your own, but other times drop silverware or have difficulty holding glasses, this may qualify as needing assistance with eating. Eating must be help with physically eating (cooking and shopping doesn't count)
  • The Past Seven Days - In some states they decide what kind of help you need by looking at the past seven days. If you have gotten any help with personal care in the past seven days, it's very important to tell them so they will see what kind of help you need. If you have not gotten any help, it is important to say what problems this has caused... for example, if you had bathroom "accidents" or went for periods of time without food or bathing because you did not have help.

THE INTERVIEW
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    [/fright]Personal Care Questions -
    These are the most important questions. In some states, if someone says no to even one question, they will automatically be denied. Some people answer these questions by quickly saying "no" especially if they feel shy or embarrassed. It is better to give a more detailed answer. If their are any ways you need help, you can answer by saying "sometimes" or "somewhat" and explain what is true for your situation. The caseworker can then decide if your situation qualifies.
  • Health and Life Questions - These are questions about your health, symptoms, medications, eating, conditions, mental health symptoms, and life. These questions are less important. If you say no to some of these questions that is fine. Just be honest and don't hide any of your symptoms or problems. If you are more lonely, depressed, needy and pathetic, this will give you extra points!
  • Caregiver Questions - These are questions about finding and supervising a caregiver. These questions are not important. The questions will be things like: How will you find a caregiver? Can you sign time sheets? What will you do if your caregiver steals from you or is abusive? What will you do if you have an emergency? To answer these questions, just use your common sense, and let them know if you want to select and oversee your own caregiver or you want someone to do it for you.
  • How Do I Explain My Limitations? Many disability advocates recommend that if you have good and bad days, you can answer questions by saying "When I am in pain..." or "When I am having severe symptoms..."
  • I'm Too Sick! The interview may be about 20-30 minutes, on the phone or in your home. You can do your interview while lying in bed. If you cannot answer questions at all, and someone else is taking care of you, they may be able to answer the questions for you.

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SUPPORT FROM YOUR DOCTOR

In most states, your doctor is asked to sign a form. Please talk to your doctor and tell them you are applying and what your needs are. It is extremely important that you be clear about your personal care needs.
  • Why Do I Have to Talk to My Doctor? Won't He Know This? No. Your doctor probably won't know anything about applying for home care. You need to tell your doctor what program you are applying for, why you are applying, and what kind of help you need. Your doctor is not a mind reader, he will not know what kind of help you need at home if you do not tell him.
  • What Do I Say To My Doctor? Here is what Suzy said: "I am applying for a Medicaid waiver to get a caregiver. They may contact you or send you a form. I am applying because I need assistance with dressing, eating, bathing, bathroom, and personal care." Your doctor may examine you and make a decision about your medical needs for personal care. If you are able to tell him all of your needs and be totally honest, he will be able to make a better decision.
  • My Doctor Doesn't Like Paperwork - Many doctors tell patients that they won't fill out disability paperwork. This is different. This is a simple form sent to your doctor by Medicaid. It should only take a few minutes. If you run into any difficulties, you can let your doctor know that this is not a disability application.
  • Cautionary Tale - Jane applied and spent a year on a waiting list, but never spoke with her doctor about it and never discussed her personal care needs. Her doctor did not know she was applying and never examined her to make a decision about her personal care needs. When she got to the top of the waiting list, they sent her doctor a form. He checked the wrong box on the form and she lost the whole thing!

GETTING TURNED DOWN

Some people who are extremely ill but still get turned down. The most common reason people get turned down is because of the personal care questions. Some people are too shy or embarrassed to admit they need help. Some people quickly say "no" to personal care question because they do not need this kind of help every time or in every way.

Here are some things that won't really help:
  • "I am on disability" - This does not matter. What matters is how you and your doctor answer the medical and personal care questions.
  • "I have a really sad story" - This does not matter. What matters is how you and your doctor answer the medical and personal care questions.
  • I have tests that prove I have CFS/ME - This does not matter. What matters is how you and your doctor answer the medical and personal care questions.

Iif you get turned down, and then your condition worsens, you can reapply in a few months.

If you get turned down because you were too shy or embarrassed to discuss your personal care needs, or because the questions confused you or you had difficulty remembering all the answers, you may be able to request another interview now.

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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. If you have too much money, please look into the Medicaid rules, they are complex. These are some basic guidelines. Please double check.
  • 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.
  • My Spouse Has Too Much Income - In most states, this does not matter. They do not look at your spouse's income. They only consider your income.
  • I Have Too Much Money - Can I Spend It? - Yes, but you must spend it in the right way to qualify. You cannot give it away. You cannot own more than one house or one car. You can pay down your mortgage, by a house, by a car, or spend it on yourself in other ways.
  • 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. There are two exceptions that I am aware of: Medicaid will allow you to give money to your disabled child (child can be any age, can be an adult). Medicaid will also allow you to give some money to your spouse. The amount is different in each state. 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 Own a House - When you pass away, Medicaid may take your house. Please google "Medicaid estate recovery". If you are married, they may wait and take the house after you spouse passes away. If your unmarried child is living in the house, they may also wait. Your family can also apply for a hardship waiver to keep your home.
  • I have a Lot of Money or Complicated Finances - Talk with a lawyer who specializes in Medicaid Estate planning.

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WHERE TO APPLY

Home Care Waiver programs can sometimes be tricky to find. They have different names in every state, and they are often changing.
  • Try calling the adult services department at your local Social Services agency and ask to speak to a Social Worker.
  • Try calling your state agency on aging (even if you are young). These two places may have different services so please try both.
  • Try contacting your medicaid office, and ask to speak to someone who handles "medicaid waivers" or "medicaid long term care". You can also look up the names of waiver programs in your state.
  • Here is a: Great website on home care programs in every state. This is a GREAT website, but Medicaid rules constantly change, so please double check. The Illinois program is not listed on this site click here for Illinois.
  • Remember, many states have more than one home care program. Keep looking and try to find out everything that is out there. If one program has a waiting list and one does not, you may be able to get into the quicker program now, while staying on the waiting list for the better program.


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More Resources

how to get a caregiver:
https://howtogeton.wordpress.com/how-to-get-a-caregiver/

how to apply for a medicaid waiver homecare program:
https://howtogeton.wordpress.com/2017/07/26/how-to-get-a-caregiver-through-a-waiver-program/

how to decide between self-directed care and agency care:
https://howtogeton.wordpress.com/2017/08/27/how-to-decide-agency-care-or-self-directed-care/

questions asked during personal care interviews:
https://howtogeton.wordpress.com/2017/05/09/12773/

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Thankyou, for preparing us for the worst.
Superb review of a program I didn't know existed Kit Kat - thanks so much for all the work :)
Kit Cat
Kit Cat
Thank you so much for all your help with this Cort. You have been wonderful.

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