Caring for a loved one with dementia, such as Alzheimer’s disease, can be a difficult task. Often this task of caregiving falls to a family member, and as the disease progresses, the care needs become greater, requiring more hours of the caregiver’s time. In fact, the caregiver might need to cut back on their work hours or quit their job altogether in order to provide the care the individual requires. Fortunately, in the US, it is possible for one to be paid to care for a loved one suffering from dementia. There are variety of different programs that offer this option. However, there can be significant hurdles in the process. One must be patience and persevere.
Medicaid is a nationwide program but its benefits, eligibility requirements and other rules are state specific. In most, but not every state, Medicaid offers at least one program that can be used to pay family members for their caregiving efforts. Depending on the financial situation of the individual with Alzheimer’s or related dementia, he or she may qualify for Medicaid. In general terms, if a senior has income under $2,200 and liquid assets under $2,000, he or she will likely qualify for Medicaid. More on Medicaid eligibility. Follows are four programs or methods by which Medicaid will legally pay family members for providing care.
1) Medicaid State Plans
While each state has a Medicaid State Plan, the specifics of the program may vary based on the state in which one resides. However, most states offer personal care services through their state Medicaid plan. Often states allow family members to be personal care providers. In other words, Medicaid pays a family member to provide personal care for their relative suffering from dementia.
2) Medicaid Waivers
Most states also offer Medicaid Home and Community Based Services Waivers, which are often abbreviated as HCBS Waivers. As the name indicates, services are provided in the home and community. This is especially ideal for those with dementias who do not require 24-hour supervision and prefer to remain living in their home. A perk of these HCBS Waivers, like the state Medicaid plan, is that many of them allow for consumer direction, also called self-direction, when it comes to choosing a personal caregiver. This means that a family member, often an adult child, is able to come into their parent’s home and assist with everyday tasks. This might include helping the senior with dementia pick season appropriate clothing to wear, reminding him or her of doctor appointments and providing transportation, choosing and preparing healthy meals, and doing laundry and light housecleaning.
However, it’s important to note, unlike the personal care services provided via Medicaid, which are entitlements, HCBS waivers are not entitlements. This means that there are only a certain number of allotted spots for each waiver program and waiting lists may exist.
3) Adult Foster Care
In many states, foster care programs are also available via Medicaid. This arrangement allows an individual with dementia to move into the home of a caregiver and receive around the clock supervision. This is a great way for someone who cannot live on his or her own and does not want to move to an institutional setting, such as a nursing home, to receive the care needed to remain in the community. Another huge bonus with foster care is that many states do allow family members to provide the foster home. While these programs do not contribute to the cost of room and board, they do provide compensation for providing care for the individual with Alzheimer’s. As those with dementia seem to be forgetful, this care might include reminders to bathe, to comb one’s hair, to change from pajamas to everyday clothes, or to take their medication. It might also include preparing healthy meals, driving the individual to appointments, and doing their laundry. Foster care programs may be through the state Medicaid program, a Home and Community Based Services Waiver, or a managed Medicaid program. Once again, this will vary by state.
4) The Caregiver Child Exemption
Sometimes called the caretaker child exception, is a Medicaid exemption that is relevant for an adult child who has a parent with dementia. It is somewhat similar to foster care, in that the adult child lives with his or her parent and provides a high level of supervision and assistance with daily activities. However, in this situation, the adult child moves into the home of his parent with dementia to provide care. They don’t receive compensation directly from Medicaid. Instead, state Medicaid rules usually require that a home be forfeit in exchange for care. This Exemption allows the home to be transferred to the adult child and in this way, they are compensated for providing care.
It’s important to note, if opting for this means of compensation, it is important to do it right, so as not to violate Medicaid’s Look Back Period. (This is a period of time that Medicaid looks back on all financial transactions and if it is found assets were transferred below fair market value, it can result in a period of Medicaid ineligibility). To avoid violating the Medicaid Look Back Period, the adult child must live with his or her parent and provide care for a minimum of two years prior to the parent being institutionalized. The parent must also require a level of care that if not for the care provided by the adult child, he or she would need to be placed in a nursing home. This means that before taking this route, one must seriously consider if he or she will be able to provide care for two years to a parent with Alzheimer’s, particularly if the parent is near late stage of the disease, which often requires more extensive care than an adult child is able to provide.
State Funded, Non-Medicaid Programs
In addition to the Medicaid options listed above, there are also non-Medicaid state programs that pay relatives to provide care for a loved one with dementia. These programs, like many of the Medicaid programs, allow the consumer (the individual who requires care) to choose the caregiver that they see fit to provide the care. Unfortunately, not all states offer these types of programs and they are difficult to find and usually limit enrollment. The American Elder Care Research Organization make a strong effort to track these programs.
Programs for Veterans
For seniors with dementia who are veterans, there are veteran-specific programs that assist in paying for care. For instance, as part of the VA Medical Benefits package, Veteran-Directed Home and Community Based Services is available. This allows seniors with dementia to receive care in their home and community via funds from a flexible budget, rather than require nursing home care. Since the services are veteran-directed (self-directed), he or she can choose the caregiver of their choosing. This means a family member can be paid to provide the care that is needed, which may include a variety of services to assist the individual with Alzheimer’s.
2) A&A Pension
Another option for veterans, and their spouses, who served during a period of war is the Aid & Attendance Pension. This pension is intended to assist with the cost of long-term care and is ideal for those who are suffering for dementia. As Alzheimer’s progresses, not only will the senior need reminders to perform daily activities, such as brushing one’s teeth or washing one’s hands, physical functioning will also be affected. One may need assistance with eating, dressing, moving from one location to another, using the bathroom, and so forth. The Aid & Attendance Pension is intended for those who require assistance with the above daily living activities and is an extremely desirable option since veterans can choose their own caregiver, including relatives.
Paid Family Leave Programs
Three states (California, New Jersey, and Rhode Island.) currently offer Paid Family Leave Acts. New York will also have one come January, 1, 2018. With this option, it is the relative’s employer that provides pay (at a reduced rate) while he or she takes a leave from work to provide care for his or her loved one. This leave can generally be up to 6 weeks, though Rhode Island limits it to 4 weeks. While this isn’t a long-term solution to providing care for a loved one with Alzheimer’s, it does allow for a short-term solution. For instance, it might be ideal to take this leave when the individual with dementia is on the cusp of requiring nursing home care, but is still able to live at home if a family member is able to provide care. Alternatively, instead of taking 6 consecutive weeks of leave, a caregiver may elect to take one day each week to provide care.
Long-term Care Insurance
Long-term Care Insurance is another possibility for family members to be paid for providing care for a loved one with dementia. Each policy is different, so one will need to determine if their specific policy will indeed pay relatives for providing care. Some policies that do allow relatives to be paid caregivers require that the caregiver be certified to provide care. However, this is a rather simple process and one should not feel intimidated.
Applying tax deductions, while not technically a way to be paid for providing care, is a way to offset the cost of care. For example, say your mother who is suffering from Alzheimer’s lives in your home and you are fully supporting her. As a result, you can deduct certain medical expenses from your taxes, such as the cost of doctors’ visits, prescription drugs, and home modifications that are medically necessary, such as grab bars.
One may also apply a tax credit (child and dependent tax credit) if he or she pays for a dependent person with dementia to be cared for while he or she is at work. Again, while it doesn’t directly pay the family member for providing care, it does decrease the amount of taxes one will owe, in turn, saving the individual money.
As one can see, there are several ways to get paid to provide care for a loved one suffering from Alzheimer’s disease or another dementia. Since each situation is highly personal, all the circumstances should be carefully considered in order to find the best solution for you and your family.