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By Cheryl Tai

From Fall 2016 Forum

For those patients that are homebound and, sometimes, bedridden with CFIDS/ME, you are eligible to have a free home caregiver that can help by preparing food for you as well as helping you with bathing, dressing, and cleaning your home. The caregiver can help you get to your physician’s office.

What’s even more amazing about this federal program is that you get to choose your own caregiver! You can choose a family member or a good friend and they will be paid for their help. If the caregiver you choose gets too tired of giving you the help you need or moves away or gets another job, you can always find a new caregiver.

Why would the government pay for this? Because they actually save money by keeping patients out of nursing homes. Instead, the PWC/ME can stay in their own home and choose their own caregiver.

Similar programs are available in other countries as Well such as in Canada, Australia, Scotland, England and New Zealand. ln the United States, there are two programs. One is for veterans and the other is self-directed home care via Medicaid. However, the patient need not be on Medicaid to take advantage of this program. You may be eligible even if you are not on Medicaid or have too much money to be on Medicaid. That depends on which state you live in as the rules in each state are different. If you’re too poor to pay, you are still eligible although you may have to pay a portion if you have too much money.

What if someone is already helping you out? If they are, then Medicaid can pay that person. That applies if you’re living with that person or are living separately. What if your caregiver is a family member? Medicaid will still pay if it’s your parent, your sister, brother or even a cousin! ln many states, however, Medicaid will not pay for the caregiver if he or she is a spouse.

Caregivers do not need any special training in most instances but there are some states that require that caregivers take a special training course such as first aid or CPR. The program is designed for personal care help such as bathing and eating but, once the program is begun, it can also apply to shopping, cleaning, laundry and getting to your doctor. The number of hours vary state by state. In some states, a caregiver can be paid for 5 hours a week yet in others they may be paid for up to 60 hours per week. It is up to you and your caregiver as to the number of days and the amount of time they spend on your care.

The rules are different in each state as to who is eligible for this program. In order to qualify, you must need help with personal care such as bathing, dressing, bathroom and eating. If you need help in all of these areas, you will certainly be eligible for a caregiver. Depending on the state, if you need help in only some of these areas, you may not be eligible. This program is not designed for full time help as it does not cover 24-hour home care. You don’t have to be on SSI or even SSDI to qualify for this, however. You won’t qualify, however, if you only need help with shopping or house cleaning although some states do provide “household help”.

How do you apply? The first step is an interview. It may be by telephone or it may be someone corning to your residence. You’ll have to answer all sorts of questions about what type of help you need. The second. step is getting your physician’s approval and signature. Some states mail it to your doctor and some ask you to have your physician sign. But that’s all!

The questions that are asked must be answered truthfully and in detail. As an example, when you are asked if you need help dressing, you must be explicit in what you are unable to do yourself. Laundry doesn’t count in this area. You rnay be able to wash yourself, but do you need help getting and out of the tub. Even brushing your teeth qualify for this area. You may need help to stand up or to hold a glass to drink but cooking doesn’t count in this area. Some states ask you about the type of help you needed in the past week. The personal care questions are eating, dressing, bathroom bathing and mobility and some states deny you care if you don’t need help in each of these areas. One must be honest and not try to hide any symptoms that made any area difficult. If your situation depresses you or makes you lonely, be honest! The interview may last for a half hour.

Because most states require a physician to sign a form, make sure your physician understands your need for personal care. The form is short and easy for the doctor but let your physician know to expect it.

Personal care carries the most weight. It doesn’t matter much if you have no way to get food or even cooking it but if you have trouble eating it such as dropping your fork or spoon, that rnatters! Remember, don’t be embarrassed but be truthful about the things you try to hide from others.

There are some financial tips to consider. One is if you have too much money. Before you apply, buy a car or a house or simply pay down your mortgage. Don’t buy something too valuable unless it’s just your one car or your own house. And don’t think of giving it away to anybody or even to the NCF. There are just a couple of exceptions. You can give money to your own disabled child or to your own spouse. Each state has their own amount that is eligible to do this. Each state differs on how much you can put money into a pooled or special needs trust. If you own your house, google “Medicaid estate recovery” to avoid Medicaid taking the house if your life ends.

Sometimes, a patient in one state may not be covered. First, find out what Medicaid waivers are offered in your state. Double check because their rules change often. They may put you in a program that isn’t covered by a Medicaid waiver. Ask What Medicaid options are available. Some may have a waiting list and some may not. There are other home care programs that are not covered by Medicare or by Medicaid. Many of these will not allow you to choose your own caregiver.

If you need some personal care in your home, see what is available where you live. You can call your area’s Adult Protective Services Department or your state agency on aging no matter how old you are. They usually give you less than Medicaid but it is best to check out all that is available since the offers vary by state.


The National CFIDS Foundation * 103 Aletha Rd, Needham Ma 02492 *(781) 449-3535 Fax (781) 449-8606