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Programs that Compensate Family Members to Care for Loved Ones with Alzheimer’s or Dementia

Last Updated: October 29, 2019

 

Introduction

Caring for a loved one with dementia, such as Alzheimer’s disease, can be a difficult task. Often this task 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 their loved one 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 Programs that Pay Family Members

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. There are several different types of Medicaid programs through which a family member might be compensated. Readers should be aware that compensation might not always refer to cash compensation.

Types of Medicaid Programs

1) Medicaid Waivers

The most common way family members are compensated for caregiving is through Medicaid Home and Community Based Services Waivers (HCBS Waivers). Most, but not all, states offer HCBS Waivers. As the name indicates, services are provided in the home and community. This is ideal for those with dementias who do not require 24-hour supervision and prefer to remain living in their home. Many HCBS Waivers allow for “consumer direction”, also called self-direction. This means when it comes to choosing a personal caregiver, the Medicaid beneficiary can self-direct or choose whomever they want. They can choose a family member, often an adult child or sometimes even a spouse to assist them with everyday tasks. This might include helping the senior with dementia pick seasonally 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.

Medicaid provides the care recipient with a financial allowance instead of providing them with care services (this was originally referred to as a “Cash & Counseling” program). The Medicaid beneficiary then compensates their caregiver / family member from that budget. Medicaid waivers have limited enrollments slots available and often times states have wait-lists.

2) Medicaid State Plans / Regular Medicaid
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.
Medicaid state plan services often higher more strict financial eligibility criteria than a state’s HCBS Waivers, but these programs are entitlements. Meaning, these programs do not limit enrollment.

3) Adult Foster Care

In some 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. To be clear, one cannot move into the home of their spouse and receive care, but they may be able to move into the home of their adult children or sibling to receive care.

These programs do not contribute to the cost of room and board, but they do provide compensation for providing care for the individual with Alzheimer’s. 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. Caregivers must reside and provide care for their parent for a minimum of 2 years for this exemption.

 

Medicaid Eligibility

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 valued under $2,000 not including their home, he or she will likely qualify for Medicaid. Each state has different financial rules, care need rules and spousal protections, though many states are similar. Furthermore, each of the programs described above may have different eligibility criteria. More on Medicaid eligibility.

It should be noted that when looking to qualify for Medicaid 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. Persons who finances exceed Medicaid’s strict requirements might still become eligible through working with a professional Medicaid planner. Learn more.

 

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, they are difficult to find, usually limit enrollment and often have wait-lists.

State Program Name and Description
Arizona The Non-Medical, Home and Community Based Services (NMHCBS), among other benefits, allows family members to be compensated for providing personal care to a loved one with Alzheimer’s or dementia.  Enrollment may be limited.  Contact your local AZ area agency on aging for more info.
Florida Florida offers two programs through which family members can be compensated: Home Care for the Elderly and Community Care for the Elderly.  These programs are designed for persons who would otherwise require nursing home care, so not everyone with Alzheimer’s or dementia will automatically be eligible.  In addition, these programs have limited funding, therefore wait-lists may exist. Contact your local area agency on aging.
Hawaii The state’s Chore Services Program and Community Living Program both allow beneficiaries to select care providers and family members can be selected as care providers.  Participants cannot be eligible for both Medicaid and these programs concurrently.  For more info, contact your island’s Aging and Disability Resource Center.
Kansas Kansas passed the “Senior Care Act” which provides for a program that allows non-medical care services to be provided by unskilled caregivers, including certain family members.  Contact your Kansas Area Agency on Aging.
Kentucky The Hart Supported Living Program is intended for disabled individuals.  Therefore, only persons with moderate to severe dementia would be eligible.  That said, those who are eligible can receive personal care from a family member and that family member may be able to receive limited compensation for their efforts.  More info is available from state area agencies on aging.
Maine The Consumer-Directed Home Based Care Program provided by Maine’s Office of Aging and Disability Services, as implied by the name, allows for consumer-direction of home care. Certain family members can be compensated to provide care.
Maryland The state’s Attendant Care Program was created to help disabled persons live at home.  Not all persons diagnosed with Alzheimer’s or dementia are officially designated as disabled by Social Security.  Those persons whose dementia is severe enough to be disabled, may be able to hire family members to provide them with care.   Learn more from the Maryland Department of Disabilities.
Massachusetts The Enhanced Community Options Programs provides in-home assistance to those with Alzheimer’s (as well as others).  Care recipients are able to select their care service providers and care providers can include family members for certain types of care services.  Learn more including the financial eligibility criteria from your local Mass area agency on aging.
Minnesota The state’s Alternative Care program is intended for persons that would otherwise require nursing home level care.  Accordingly, not all persons with dementia are eligible.  That said, those persons who are eligible can receive assistance from family members in their homes.  Contact your county social security office for more details.
Nebraska For Nebraska residents whose dementia is advanced enough for them to be officially disabled, this program provides personal care at home and allows for self-selection of care providers.   For wait-list information and financial criteria, contact the state Department of Health and Human Services.
Nevada The Community Options Program for the Elderly is designed to minimize nursing home placement, therefore NV residents with dementia, must have their dementia advanced enough to qualify for nursing home level care.  If that is the case, then can receive care services in the homes provided by family members.  Contact Nevada Aging and Disability Services for more information.
New Jersey The New Jersey Assistance for Community Caregiving program provides care services valued at up to $600 per month and beneficiaries can select their care providers.  The program does have restrictive financial eligibility criteria and persons must require nursing home level care, therefore not everyone with dementia will automatically meet the program’s criteria.  More information is available from NJ’s area agencies on aging.
New York EISEP or Expanded In-home Services for the Elderly is a program intended for those not eligible for Medicaid.  However, financial criteria are still restrictive.  Under this program, those in need of care can choose their care providers and family members are among those who can be hired to provide unskilled care.  Learn more from NY area agencies on aging.
North Carolina In-Home Aide Services in North Carolina allows persons with dementia (although dementia is not a requirement) to receive assistance in their homes for approximately 10-20 hours per week.  While “nursing home level” care need is not a requirement, persons with higher needs receive higher prioritization for assistance.  Care providers can be chosen by the beneficiary, allowing certain family members to be hired.  Learn more from your county Department of Social Services.
North Dakota ND offers a program called Service Payments for the Elderly and Disabled (SPED) and another “Expanded” version (Ex-SPED).  “Nursing home level of care” is not required, but assistance with at least 4 activities of daily living is required.  Family members can be hired to provide such assistance.  For information, contact a county social service office.
Ohio Although not available statewide, the Elderly Services Program does provide for family members to be hired as paid caregivers for certain non-medical assistance.  One should contact their local area agency on aging for more information.
Oregon Oregon’s Project Independence (OPI) is specifically designed for state residents with a diagnosis of Alzheimer’s or related dementia.   Among other assistance, the program covers personal care (assistance with the activities of daily living) and allows for certain relatives to be hired as providers of those services.  Contact the state Department of Human Services for additional details.
Pennsylvania PA Options Program allows for self-direction of personal care up to approximately $750 month in services.  Participation in the program is not limited to those with dementia, but financial eligibility criteria exist.  Contact your local area agency on aging for more information and to learn the application process.
Tennessee Tennessee OPTIONS for Community Living Program is designed for elderly, non-Medicaid (TennCare) residents that require assistance to remain living at home.  Personal care, which can be provided by certain relatives, is among the benefits.  For more information, contact your local area agency on aging.
Texas Under a Texas program called Community Care for the Aged / Disabled, there is a benefit called Consumer Managed Personal Attendant Services which allows beneficiaries to choose and hire their own caregivers which can include their family members.  The program has financial eligibility criteria. For this information and how to apply, contact your Texas Aging and Disability Resource Center.
Utah The Home and Community Based Alternatives Program provides for up to $750 per month in care services. Personal care is a benefit and the beneficiary can self-direct or choose their own caregiver.  Family members can be chosen as caregivers.  The program does have financial eligibility criteria and participation is not limited to only those with dementia.  More info is available from Utah area agencies on aging.
West Virginia WV Lighthouse Program allows participants to choose their caregivers.  Funding is limited and benefits are not free. Instead participants are charged on a sliding scale.  For information, contact the WV Bureau of Senior Services.

 

Programs for Veterans to Care for their Loved Ones

1) Veteran Directed Care Program
For seniors with dementia who are veterans, there are veteran-specific programs that assist in paying for care. As part of the VA Medical Benefits package, Veteran Directed Care Program (formerly called 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. More information is available here.

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. However, because the VA counts a spouse’s income when considering eligibility, Aid & Attendance cannot be used to pay a spouse as a caregiver but can be used to pay adult children and other family members. Read more.

 

A positive trend among states are the creation of Paid Family Leave programs. For years only 3 states offered Paid Family Leave that could be used to care for family members with dementia. However, recently this list of states has expanded and now includes California, Connecticut, Massachusetts, New Jersey, New York, Rhode Island, Washington, and Washington DC.

Under Paid Family Leave, it is the relative’s employer (or their insurance) 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 throughout most of the year 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. Alternatively, if relatives are not permitted to be paid, one might consider forming a home care agency and hiring and paying the agency instead. In some states, this workaround approach may be adequate.

 

Tax Deductions and Credits

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.