How Much Do Family Members Get Paid For Caregiving?
Discoveries from a recent AARP study in June 2021 revealed that an astounding 78 percent of family caregivers face ongoing financial burdens when caring for their loved ones. This unpaid dedication and costly responsibility severely impact their financial stability
We are living in a time when the population is growing older. For the first time in the history of the world, we have more seniors than youth. This is creating a crisis on many different levels
We are living longer. Not necessarily healthier. Becoming a caregiver for a family member or friend can just creep up on you.
You start doing little things. Helping with shopping, or running errands. The average family caregiver spends on the average of 20 hours a week providing some sort of assistance.
Over time, the family caregiver find themselves spending significant amounts of time, and energy trying to run two households and meet the needs of the entire family. Many are finding that assuming this role has turned into a full time job.
There are many family caregivers trying to decide of they should retire early and leave the workforce. Or should they hire someone to help provide care? There are other family caregivers that are expected to provide that care, no matter what the negative financial consequence.
Many feel an obligation to provide care to their aging parents, and honor their wish to remain in their home.
Aging in place
And, today, Aging family members want to remain in their homes and community as they age. Most family caregivers do not realize that providing care can last as long as 20 yrs.!
Some bouts of caregiving may be short. Then as the aging senior declines, their needs increase.
Family caregiver out of pocket expenses
An AARP study of June 2021 found that 78 percent of family caregivers regularly incur out-of-pocket costs while providing caring for a family member. The average annual out of pocket costs on the average a family caregiver spends is $7,200.
That unpaid care provided and expensive commitment makes it hard for caregivers to make ends meet.
Twenty-eight percent say they have stopped saving money. 23 percent have taken on more debt.
This leads to the question, “Do family caregivers get paid?”
The answer is, maybe. There are many variables that need to be addressed.
There are very few programs that financially compensate the family caregivers. It is reported that one in four family members provide unreimbursed care. It is reported that there is over $570 million dollars worth of unpaid care.
The family caregiver is the single largest pillar of the long-term care system.
It is always a total surprise to families to learn that Medicare does not pay for any type of long term care services. They do not pay for in home care or what they call unskilled care. Basically, that’s a word for custodial care. Medicare does not pay for adult day care either. Family caregivers may qualify to be paid under circumstances. So, let’s address how you may get paid as a family caregiver.
States may pay under Medicaid program
There are some states that will pay family caregivers. This depends on if the aging family member is a recipient of their state’s Medicaid program. Medicaid provides health coverage for some low-income people In some states the program covers all low-income adults below a certain income level. To qualify for Medicaid, you must apply, There are very strict rules. If you have too much money, it will have to be spent down, in order for the state to provide assistance.
There is a look back period, and the aging seniors finances are investigated. Depending on the state, there may be a 5 to 7 year period that you will have to provide financial information to be considered for Medicaid qualifications. I suggest that every family caregiver, learn what the state laws on how to qualify for Medicaid.
There are several reasons for this. There are a few states that will pay a family caregiver, that do not qualify for Medicaid.
True to any government run program the criteria for these programs are strict and the application process is complicated.
Consider a family caregiver contract
For those that have an aging family member, that have are a not going to qualify for Medicaid until they spend down their savings, I recommend that you consider a family caregiver contract. I’m not going to discuss this in detail later in this lesson.
I recommend that you contact your local Area Agency on Aging. They may be able to provide detailed information on whether your state’s Medicaid program will pay a family member. They may have additional information on federally supported programs that aim to help ease the financial burden that caregiving.
There are disease specific organizations like Alzheimer’s assoc, American cancer association,that may offer grants or other financial assistance to those diagnosed with the disease and the family members who care for them.
I have a hard time with these disease specific organizations. They raise billions of dollars year and focus on a cure for a disease instead of focusing on providing respite care of financial support for those providing care. I find these organizations stingy with their grants and funds
Your chances of getting paid to be a family caregiver are best if you’re family member is a U.S. military veteran. Other possibilities exist.
I want to first address the benefits of the US military veteran.
If you have a family member that served in the military, there is the County Veterans Service Officers.
They can provide assistance in obtaining veterans benefits.
The National Association of County Veteran Service Officers (NAVSCO) has an online locator to direct you to your County Veteran Service Office or the Department of Veteran Affairs.
There are four military programs that you should explore.
The Veteran Directed Care program
This Department of Veterans Affairs (VA) program allows qualified former military and service members to manage their own long-term services and supports. It is available in 42 states, the District of Columbia and Puerto Rico. It is a program that is for veterans of all ages. You must be enrolled in the Veterans Health Administration health care system.
The key here is that you need the level of care a nursing home provides, but want to live at home or the home of a family member.
There is a flexible monthly budget, based on a VA assessment of the veteran's needs. It allows the participants to choose and services they find most useful. This includes paying a caregiver to assist with activities of daily living, such as bathing, cooking, feeding, dressing.
Because it is self directed, the veteran chooses the caregiver. They may pick any physically and mentally capable family member. This includes an adult child, grandchild, sibling or spouse.
VA medical centers determine eligibility and make referrals. Contact your local VA center for more information on the program.
Aid and Attendance program
This program supplements a military pension. It helps to cover the cost of a caregiver, who may be a family member. The aid and attendance benefits are available to veterans who qualify for VA pensions, and meet at least one of the following criteria.
The vet:
- Requires help from another person to assist with tasks such as bathing, dressing and eating.
- Is confined to bed because of disability.
- Is in a nursing home because of physical or mental incapacity.
- Has very limited eyesight, less than 5/200 acuity in both eyes, even with corrective lenses, or a significantly contracted visual field.
Surviving spouses of qualifying veterans also may be eligible for this benefit.
To apply, complete the fill out the Aid and Attendance program. It requires an explanation why a caregiver is needed. It should include an attending doctor's report.
Be specific about the disease or injury that caused physical or mental impairment. On the form, they want you to explain on the form your typical day. They want to address mobility issues; inability to manage basic daily needs without assistance.
What are housebound benefits?
The next US military benefits program is called the housebound benefits
This program is for veterans who receive a military pension, They must be confined to their home because of permanent disability. They can apply for a monthly pension supplement.
The application process is the same as for Aid and Attendance benefits. It's important to note here, you cannot receive both housebound benefits and and A&A benefits at the same time.
The last program veteran program I want to make you aware is the program of Comprehensive Assistance for Family Caregivers
This program provides a monthly stipend to family members who serve as caregivers for veterans. The veteran must need assistance with everyday activities because of a serious injury or illness sustained in the line of duty on or before May 7, 1975, or on or after Sept. 11, 2001. (Benefits will be extended in October 2022 to veterans who suffered a service-related disability between those dates.)
The veteran must be enrolled in VA health services. Have a disability rating (individual or combined) of 70 percent or higher. They need either personal care related to everyday activities or supervision or protection because of their condition.
The caregiver must be 18 or older and a child, parent, spouse, stepfamily member, extended family member or full-time housemate of the veteran.
The stipends are based on federal pay rates for the region. This is based on the state he eligible veteran lives.
Other caregiver benefits through the program include these:
• Access to health insurance and mental health services, including counseling
• Comprehensive training
• Lodging and travel expenses incurred when accompanying vets going through care
• Up to 30 days of respite care per year.
I do want to make you aware that the government programs may take up to 2 years to get approval. It is a slow arduous process. It is unacceptable amount of waiting. And hopefully this will be addressed as we move towards our caregiver crisis.
Long term care insurance
Another alternative that a family caregiver may get paid is through long term care insurance. If your aging family member purchased a long term care policy, it may or may not pay for home health care and personal care services. It will depend on the coverage they purchased.
It is important to contact the long term care insurance agency and find out what services are covered. I cannot tell you how many times I have had family members upset because there was not a cost of living rider on the policy. If the policy was purchased 20 to 40 yrs ago, the cost of living has gone sky high. The rate the company will pay, under that plan, is not even close to covering present day rates.
There are also rules and expectations that will require a family to notify the insurance agency when the aging senior is admitted to the hospital. Some policies require a 30 day window of notification after a hospitalization. I have had clients denied coverage, because this requirement was not met.
There are policies that will not extend coverage to pay spouses or other family members. With the direct care worker shortage we are facing, this may need to be appealed, if you cannot find an outside caregiver to provide services.
Contact your family members insurance agent or insurance company for specifics and request a written confirmation of benefits.
Now I want to address the family caregiver contract.
Family members provide the majority of care for the older seniors in their lives.
They do it at a great personal and financial expense. The change in the economy, and the shortage of direct care workers has many family members exploring the option of getting paid for caring for their aging senior.
This can help the caregiver with any financial loss they may incur with their caregiving duties.
The aging family member also benefits from having a trusted family member provide care for them.
Developing a family caregiver contract can help seniors remain in their home, as well as protect the assets from nursing home costs.
Many family members, in a role as a primary caregiver, provide care on an informal basis. They do not require or expect payment. They make great sacrifices and would benefit from receiving payment, however modest it may be.
If you are considering exploring a family caregiver contract please consult an elder care attorney.
Some of you listening have been a family caregiver are thinking of all the care they provided and now want to get reimbursement.
It is important to note, you cannot develop a family caregiver contract for services already provided.
In other words, you cannot be paid retroactively for these services to protect present assets, such as the family home.
There are very strict rules and regulations that must be followed, as you spend down to qualify for Medicaid.
A family caregiver contract should be very specific about the responsibilities of the caregiver. It should also include the expectations of the aging family member.
This is so everyone is on the same page.
For the primary caregiver, having a family caregiver contract and having an elder care attorney can be very beneficial.
The attorney can help the family approach this in a business like manner. It takes out all the emotions and gives everyone involved a clear understanding of the quality of care and costs of that care.
Over the decades I have supported family caregivers. There is a consistent trend that occurs. One family member provides all the care. They make a huge personal sacrifice to provide care for their family member.
There are a multitude of other family members that do not want to or are unable to provide care. Yet, these uninvolved family members are always concerned how the finances are being handled.
Having a family caregiver contract in place, can decrease the feelings of resentment, frustration and anger that often develops with the uninvolved siblings or other family members.
The primary caregiver that assumes the majority of responsibility should benefit from the long, tedious hours of care they provide.
Caregiving is unpredictable and intermittent. The demands increase as the aging senior declines.
I can tell you from my decades of supporting caregivers has shown me that when it comes to money and assets of the aging family member, things get ugly.
The uninvolved family members are concerned how the money is being spent. So many families become unraveled. Many family caregivers endure personal attacks , false accusations and anger by the uninvolved family members.
Putting a formalized caregiver contract can allow the aging family member to utilize their finances to remain in their home. This allows them the ability to receive quality , personalized care, in the comfort of their home and community. And, rewarding the family caregiver that provides that care.
This also provides the family caregiver protection, should the uninvolved family members pursue legal action after the aging family member passes.
It is hard to accept, but this happens so much more than you know.
Over the decades I have witnessed many family caregivers, leave jobs, to provide care for a family member. They make huge sacrifices. Many are running between two households, spend their own money of things the senior may need.
There are many that have extended family members that will not support that care. They do not offer respite care, They do not offer the primary caregiver any sort of break in care. And the caregiving journey can last as long as 20 years.
The family caregiver statistics
The statistics for the family caregiver are very grim. 15 years ago, when I started my first website, I was shocked to learn that 50% of family caregivers become seriously ill or die before the person they are caring for passes.
Today, that statistic has hit 63%. Caregiver stress and burden kills. So many of the primary caregivers, family caregivers end up at or below poverty level. Many are homeless, if they provided care in the home of the senior. This occurs because the uninvolved family members swoop in and push the person that provided the most care of the way.
One of the tasks when developing a family caregiver contract is determining future care needs of your family member.
As your family member ages, they will decline. Their needs will change. Your aging family members doctor can help you to determine those future care needs. It will require an honest discussion about the medical conditions they have and what the expected disease process will look like.
You may want to consult with an eldercare consultant or a geriatric care manager, can also help you determine those future are needs.
Here’s an example. If your family member has a type of dementia, over time they may have behavioral challenges. They may become sexually inappropriate, or combative. They will become incontinent of bowel and bladder.
When you are considering being a family caregiver, you need to take the time to identify, what care you will and will not be able to provide as this decline occurs.
You have a right to set limits and boundaries on what care you will provide.
If you will not be able to handle a person that is incontinent of bowel or bladder, you need to say that.
Its ok to say, “I cannot take care of you when you reach this point
This gives everyone a clear understanding of what the expectations will be, as they provide care.
It will also prepare them for a time when they may have to allow outside help in the home to support the family caregiver or agree to be admitted to an alternative care setting.
I like to point out that the primary caregiver and aging adult must agree, that when that time comes, there will be a discussion about the options.
It is important that the aging senior to agree to allow the primary caregiver to then, oversee, and hire outside caregivers, to allow them to remain in their home.
It is important that this option be included as an option for the future.
It is important that this family caregiver look at their role as a job. You will need to determine an hourly rate or a salary.
To determine that amount, you can utilize the yearly reports released be long term care insurance companies. They are the experts and will break down the cost of home health care aides rates for each state.
Both Met Life and Genworth publish yearly reports on the cost of care in long term care.
You will be able to clearly determine the rates of pay specific to your area. This is a great resource when you are dealing with uninvolved siblings that do not think you deserve being paid.
I encourage family caregivers put a family caregiver contract in place. I want to encourage you to see it as a job. As you develop a family caregiver contract, you need to include paid time off.
Caregiver stress and burden is real. You deserve a break. You deserve time off. Include that in the contract and how that time off will be handled. Address who will provide that care during you days off or vacation days.
Included in the caregiver contract, should determine how the caregiver is going to be paid and who will be writing the checks.
You will be considered a 1099 employee by the federal government. You may need to see a tax expert on how should taxes be paid.
Providing care for an aging family member can last from a few months to a few years. Taking the steps to prepare and plan ahead are the keys to success for today’s aging seniors.
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Diane Carbo
Diane Carbo
Diane Carbo
Diane Carbo