Becoming a family caregiver is done unexpectedly for most people. Normally, it’s brought on by unforeseen circumstances or a sudden change in the health of an aging parent or loved one. It can begin with small tasks and then balloon until a family member is taking care of filling prescriptions, doing laundry, cooking, and even bathing and feeding a loved one.
According to the Family Caregiver Alliance, approximately 43.5 million caregivers provided unpaid care to an adult or child in 2015. All the evidence indicates that that number is increasing every year as the baby boomer generation ages. Unfortunately, although the economic value of unpaid caregiver services was estimated to be $470 billion in 2013, it’s very rare that there is any way to be paid for any of the work.
Unless the care is paid for by Medicaid or another organization, the only way to get paid is to have the family member receiving care or other family members contribute to the payment of the caretaker. There are a few ways to reach such an agreement, but it can be complicated and many families find themselves arguing or overreacting about such payment when under duress because of the failing health of a loved one.
Of the ways that family caretakers do manage to get paid for their efforts, Medicaid is one of the most popular. Medicare does not cover any payment to family caregivers at all, but Medicaid has a provision called the 1915(c) HCBS waiver that might allow it. However, it’s left up to the state to define how Medicaid is rolled out and how their home- and community-based services (HCBS) are implemented and what the eligibility requirements are.
Eldercare can be incredibly taxing on families. Long-term care can stretch budgets and strain relationships, and while the amount of reimbursement the limited options available do give family caregivers is not much, it can help with daily costs and, in some cases, defer the opportunity cost of giving up a paying job to take care of a loved one.
Money payment for senior care done by a family member is hard to come by. To get it, you might have to live in the right place or have the right kind of insurance. There are many organizations out there to help family caregivers get financial assistance or reimbursement for certain types of home care. The whole process can seem overwhelming and an elder law attorney might be required to truly know whether there’s a way to get paid.
It would be impossible to write a guide that could say for sure whether a given reader could get money for eldercare. But this article will serve as a solid jumping-off point and hopefully give you some ideas of where to look if you want to be a paid caregiver for an elderly parent or other family members.
First things first, you should make sure you’re doing the type of thing that’s widely considered family caregiving. There is a wide range of duties that a family member might take on for another who needs it. These can be divided into two categories, which are home services and health services. Home services are non-medical and don’t require a license to perform, which is why family members so often become responsible for them.
Examples of home care services include what are referred to as Activities of Daily Living, or ADL. Everything we have to do in our daily lives becomes an activity of daily living for aging people who can no longer perform all or some of these tasks themselves.
It might be grocery shopping, cooking, cleaning, transportation, or laundry for elderly parents. It could also be assistance with doctor’s appointments, taking medicine, getting dressed, using the bathroom, or bathing. If there’s a bigger loss of mobility, it might be necessary to help with getting out of bed or performing medical assistance with physical therapy, breathing treatments, wound cleanings, injections, or feeding tubes.
Health services are more complicated and should be taken care of by a physician or trained professional. Day-to-day medical case management is often done by an RN appointed by the physician. Catheters, IVs, parenteral nutrition, speech therapy, occupational therapy, and serious wound care all fall under this category.
Then there are all the legal and financial things we all have to handle. Between monitoring payments, bank accounts, wills, and insurance payments, eldercare is essentially doing the work of two lives at once. If there aren’t other family members to help and the care recipient is completely unable, a single person can quickly be overwhelmed.
As difficult as providing for an elderly parent or other care recipient is, navigating the complicated system of government eligibility requirements, classifications, local regulations, and health insurance policies to try and get paid for family caregiving can be a nearly endless process and that payment may well never come.
Luckily, so many people are family caregivers that it’s easy to say which methods are most likely to get you paid as the primary caregiver. Here are 10 places to start your search:
There are many government programs that could possibly pay family members for senior care, but the U.S. Department of Veteran’s Affairs (VA) is one of the most likely. They have a Family Caregiver Assistance program that has two eligibility requirements. The person rendering care services must be either a spouse, son, daughter, stepfamily, or extended family member, and they have to live full-time with the care recipient or be willing to do so once designated as a family caregiver. Secondly, the care recipient must have been discharged from the U.S. military or have a date of medical discharge and have a serious injury (including TBI, psychological trauma, mental disorder, etc.) that was caused or made worse by their active duty service on or after September 11, 2001.
The care recipient should also require a family caregiver for at least six months. This program allows the care recipient to appoint one primary and two secondary family caregivers. They may receive a monthly stipend, health care benefits through the VA’s civilian health department (CHAMPVA), and up to 30 days of respite care per year in addition to education and counseling resources and transportation reimbursement if the care recipient needs to travel to receive care.
In case the care recipient is a veteran but doesn’t qualify for the Family Caregiver Assistance program, they might be covered under the VA’s Program of General Caregiver Support Services, which has much more general eligibility requirements. The VA also has Caregiver support coordinators and a helpline.
If the care recipient is eligible for and at least apply for regular social security benefits to qualify for SSI. Other eligibility requirements include being between the ages of 18 and 65, having never been married, not being blind, being a U.S. citizen residing in one of the 50 states, D.C., or the Northern Mariana Islands, and not having received SSI benefits in the past. Unlike regular Social Security payments, the SSI program doesn’t depend on contributions from paychecks in the past.
There are some other benefits that are typically available to care recipients who qualify for SSI, such as SNAP or regular Social Security payments. Just like these other programs, SSI is reserved for low-income individuals.
Cash and Counseling provides payments to a care recipient for the duration of the time they need care. Of course, since it’s a Medicaid program, its exact parameters are decided at the state level, which means you’ll have to see what the eligibility requirements are and how much caregiver support you can expect to get from a cash and counseling program.
Cash and Counseling is a self-directed program. The basic idea is that in order to better align with individual preference and reserve professional medical facilities for those who have no other options, Medicaid recipients should be able to hire their own caretakers. This is done after a physician assesses the care recipient’s needs with the caretaker and outlines a weekly personalized care plan that allows for an estimate of hours per week or month that will be required for the caretaker to deliver the care. From that care program estimate, a budget amount is decided and monthly stipend granted.
Qualifying Medicaid beneficiaries can benefit from more control and a more personalized care plan with a Cash and Counseling program, but make sure that the family caregiver isn’t overworked. Some states may have additional steps for the assigned caretaker, such as licensing or paying some payroll tax out of payments they receive through the Cash and Counseling program.
The IRS has something called the Family Caregivers and Self-Employment tax. As with all taxes, this one is a bit complicated to understand. Generally, it applies to people who are employed to provide in-home care whether or not they are related to the care recipient. If the caregiver is a family member, there is a chance that no tax will be owed, but the caregiver could still be obligated to pay an employment tax on the payment received. In almost all cases, payment received for rendering home care services should be reported on the family caregiver’s taxes, even if the caregiver isn’t required to pay taxes on it.
Claiming an elderly parent as a dependent when they are housebound or otherwise unable to care for themselves might be the most direct way to deduct payments for medical services and other needed health care from your taxes. Generally speaking, it’s required that you pay for 50% or more of their cost of living to be able to claim elderly parents as dependents. It’s even possible to claim a friend or honorary family member as a dependent if they have lived with you for a year or more.
Deductions for medical care are mostly only available for bills paid out that have not been reimbursed by health insurance, including flex spending and health savings accounts. If the situation surrounding the care recipient meets the eligibility requirements, the family caregiver can claim up to $3,000 per individual and up to $6,000 for two or more.
This government program gives grants to states based on the amount of their population that is over 70 years old. One of the central goals of this program is to assist family caregivers and make it easier to care for elderly parents at home as long as possible, rather than sending them to an institution or nursing home. It covers several things, including:
The availability to have paid respite care is essential for family caregivers to avoid burnout, especially when rendering long-term care. If there’s only one primary caregiver, going long periods without any breaks can lead to stress and have negative effects on overall mental health. This could cause resentment for the entire situation. Here are the eligibility requirements for the National Family Caregiver Support Program:
For more information on the NFCSP, click here.
The best way to stay prepared for the financial burden of the high level of care aging parents will need in their later years is to buy a long-term care insurance policy through a well-known company like AARP well ahead of time. The downside to these plans is that they can be quite expensive, but if you are protected by one, these policies can cover medical expenses that aren’t covered by traditional health insurance. It will vary with the policy, but they are generally used to cover the activities of daily living like bathing, dressing, and getting in and out of bed.
Long-term care insurance policies are tricky because most won’t let the care recipient apply for coverage if they already have a debilitating condition like Alzheimer’s. It’s wisest to buy the coverage in your 50s or 60s well before you need it. In the end, it will be much cheaper to have coverage through one of these policies, which are great ways to make up for what normal health insurance and Medicare don’t cover.
Another thing to make sure of when you buy the policy is whether or not it will cover payments to family caregivers. Not all long term care insurance does, and even worse, if they don’t offer this coverage then the insurance agent won’t even bring it up most of the time. Asking about it upfront is critical to get coverage and have a family member as a live-in paid caregiver.
These days proper paid family leave seems to be vanishing at most companies, but if you are lucky enough to have it then it might include payments for family caregiving. Check and see if your paid leave does have this provision and see how long it lasts for. The worst part about this strategy is that it likely won’t last long, so it’s a better stopgap option than a long-term plan. Large companies tend to offer something like 3 – 4 months for family caregiving, but if it appears the care recipient will be in need longer than that, paid leave can still be a nice way to get paid while the family figures out a game plan.
If there is more than one primary caregiver or at least some siblings or other family members to help, then there are two ways that the family can pay the caregiver. The simplest way is to simply pool some money together and give it to the caregiver for expenses. Many families that try this run into trouble, though, because the stress of the situation can lead to arguments and occasionally even ruined relationships.
If the care recipient has some money put away, it can also be used to pay for the care. Just like the pooling option, though, this one can lead to disputes. In both cases, it would be extremely wise to work with an elder law attorney beforehand to draw up a personal care agreement that clearly states the duration, amount, and duties of the primary caregiver. It’s the smartest way to keep everyone in the family on the same page, plus everyone can come together to work on the personal care agreement together.
HCBS, or home- and community-based services, are implemented using Medicaid waivers that allow states to come up with custom ways to roll out the Medicaid program. Like the other options that stem from Medicaid, HCBS will depend on the care recipient’s Medicaid eligibility. HCBS is a way to offer in-home supportive services and personal care services to those who need it.
Here are the eligibility requirements for states’ HCBS programs:
For now, almost all states have some form of HCBS programs in place. The waiver programs that most consistently lead to personalized consumer-directed care plans are in states like New Jersey, Rhode Island, New York, and California. State Medicaid programs vary widely, so you’ll have to check with your state’s Medicaid website.
There aren’t many organizations that will pay family care providers and the ones that do exist tend to concentrate their efforts on care recipients with specific mental health or cognitive issues like Alzheimer’s or Parkinson’s. However, care recipients with these diseases do have long-term care needs that are more intense than others. Regardless of whether your loved one has these specific issues, it’s fairly easy to check for private charities or faith-based organizations that can help out, even if it’s only a little bit.
As relatives age, the relationship dynamic changes between them and younger family members. Sometimes, they can be more like adult children than grandparents, aunts, or uncles. Regardless, almost everyone needs some degree of home health care at some point and the vast majority of people rely on family members to tend to their care needs.
This arrangement can be very stressful for family members and a significant reason for that is the financial strain. Many people forsake their own careers and life goals for a time to care for an elderly parent or relative and getting paid for that effort can reduce stress, burnout, and other negative mental health effects.
There are many ways to attempt to recoup the costs of eldercare. State Medicaid programs are a great place to start depending on the care recipient’s Medicaid eligibility. Other government programs may have long waiting lists and, just like long-term care insurance, it’s best to investigate coverage before it’s needed.
Many places have area agencies for location-specific plans like HCBS. Finally, arrangements with family members to pool money or make a personalized care plan are great options if there are enough people, but it’s wisest to hire an elder law attorney to avoid disputes. If you are able to find a way to get paid for being a family caregiver, it can be a huge relief.