Financial Assistance for Family Care Partners

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Resources to help you identify financial assistance for your care partner.

Medicaid

Cash and Counseling Programs:

If the person who is being cared for has a disability or chronic condition and is eligible for Medicaid, they may qualify for financial assistance that can be used to purchase necessary home and community-based services and supports. Payments will go to the family care partner or to pay for respite care.

These programs are sometimes known as cash & counseling, consumer, or self-directed programs, or other names selected by the specific state. Check with your state to see if they offer these services and any training that’s required.

List of state Self-Direction Programs: appliedselfdirection.com

Support

You may be able to receive support to provide care to a Medicaid patients. To see what is available in your state, go to:

  • Medicaid Waivers
  • Long-Term Care Insurance
  • Employer-Sponsored Care Partner Leave
  • Get Paid by Family: Working together with family to understand the true cost of care for a family member when considering the cost of a nursing home, and in-home care they may recognize your support is a much more cost-effective option. If there are funds available, ask for compensation for your efforts.

If your family agrees to pay you for your caregiving efforts, consult with an attorney to arrange a contract that details your work and pay. Good documentation is important in future reimbursement from Medicaid, health insurance, or assisted living in the future.

Veteran Services

For care partners of veterans, you may be eligible for the Veteran Directed Care Program, Veterans Pensions, and/or Aid and Attendance benefit.

These programs can potentially provide some financial and other support. Check with your home state to determine what options are available to you. They may include:

Resources:

Paid Caregiver Program Locator

Provides tools, information and creative ideas to help families and caregivers discover the means to care for their elderly loved ones.

Programs of Comprehensive Assistance for Family Caregiver

Structured Family Caregiving

Several states are approved by the Centers for Medicare and Medicaid Services to offer Structured Family Caregiving. The caregiver can be paid and receive additional support.

To Qualify: The individual needing care must be eligible for Medicaid, need 24-hour care and supervision, and require help from a caregiver with one or more daily personal care needs or Activities of Daily Living.

Check with your state Medicaid agency to see if they offer this program or a similar program.

Additional Resources

Life Insurance Accessibility, Usage, and Types

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Accessibility

Employer-Provided Life Insurance

Either term policy or group whole life insurance. You can enroll in these policies during your open enrollment through your employer. Employers often offer a small amount free to you as well as to spouses and eligible children.

Supplemental Life Insurance may be offered that you can sign up for at higher amounts. You are responsible for the premiums. You may also need to get medical underwriting for the supplemental amounts. This policy is often portable after your employment ends with the employer.

Private Life Insurance Policies

When you purchase from an insurance company, you are required to pay the premiums to keep the policy in force. If a term policy depends on the amount, underwriting may be required.

For permanent policies, medical underwriting is required unless it is a guaranteed issue policy that may not take into consideration your medical history. These policies are generally for lower death benefit amounts and are more costly.

Options for Usage of Cash Value or Death Benefit

Most insurance companies offer accelerated death benefit options to the insured at issue. This will allow you to access a portion of the death benefit before death if you are considered terminally ill. (Death imminent within 12 mos.).

If you have a cash value policy:

  • You may access the cash value or death benefit through withdrawal or loan.
  • Check your specific policy to confirm available options.

Considerations when dealing with cancer:

  • Obtaining new life insurance can be more difficult, if not impossible, when diagnosed.
  • If still employed with insurance options through your employer, it’s recommended to secure this coverage.

Portability options to consider:

  • Look for portability features (ability to retain coverage if employment ends), often available with supplemental life insurance.
  • Another option may be obtaining insurance through a spouse’s employer; confirm if it remains portable if they change jobs.

Accelerated Death Benefit

Many patients are not aware that most policies offer an Accelerated Death Benefit free of charge, which is included at the purchase of the policy. This allows the patient to have access to the value of the policy if the patient has a terminal illness and, depending on the policy, has a life expectancy of six months to two years. Patients with certain disabling conditions can also qualify for Accelerated Death Benefit regardless of life expectancy. This can vary between policies, but generally the benefit is 50 to 80 percent of the policy value.

Anyone who has a terminal condition should explore the Accelerated Death Benefit option. Patients with other conditions, such as ALS, those requiring artificial life support or people with organ failure who are not transplant candidates may also qualify depending on their policies and state laws.

Who can apply if it is a group policy?

The patient, their dependent spouse, or domestic partner can apply.

How can the funds be used?

Usually, there are no restrictions on how the cash can be used. Patients can pay for:

  • Medical bills
  • Medications or experimental treatment
  • Pay-off a mortgage
  • Daily living expenses
  • Making financial arrangements for their family
  • Taking a vacation

Before deciding to take the Accelerated Death Benefit, speak to the insurance company to see what limitations, if any, are attached.

Group life insurance policyholders can contact their human resources department or life insurance carrier for more information about Accelerated Death Benefit.

Types of Life Insurance and Why You Need to Know the Difference

Life insurance is a contract between the owner and the insurance company that they will pay a benefit to your beneficiaries at your death as long as you have maintained the requirements of the contract, such as paying the premium.

Many life insurance policies have built into them additional benefits that people who have become very ill may be able to utilize death benefits before death for their medical expenses. Available through an accelerated death benefit rider and is commonly free on most policies. This policy does not build cash value.

Term Insurance

This is considered a pure life policy. It is in effect for a specified period, for example: 5, 10, or even 30 years. After this period is over, the policy terminates. You may have the option to convert to a permanent policy for a period of time before termination without having any medical underwriting.

There are also Permanent, Cash Value Policies such as Whole Life, which provides a guaranteed death benefit for the entire life of the insured.

Benefits:

  • Income tax-free death benefit to beneficiaries – generally not subject to income taxes.
  • Tax-deferred growth – The cash in the policy is tax-deferred as long as funds remain in the policy.
  • Tax-efficient access to policy values via withdrawals – Under favorable First-In-First-Out will allow for cost basis to be taken free of income tax.
  • Tax-favorable access to loans for any reason – Loans that can be taken during the insured’s life against the whole life policy are not considered a taxable event, even though the policy may have a large gain in excess of the premiums paid.
  • Disability protection – The policy can continue to be funded even if you’re disabled. If you select the Waiver of Premium rider so that if you suffer a qualifying disability, your policy will continue to provide death benefit protection and have cash value growth even if you’re not still paying premiums.
  • Liability protection – In many states, the benefits of life insurance are protected from the claims of creditors.

Insurance can help you avoid probate and provide beneficiaries with privacy. Whole-life policies provide you with the ability to pay loans back from anticipated earnings. Whole-life policies can be used as collateral for loans.

The whole life policies can be either participating or non-participating, which is defined by whether or not the cash value receives dividends from the life insurance company.

Universal or Adjustable Life Policies

Provide a lot more flexibility than whole life policies. You may be able to increase the death benefit if you pass medical underwriting. The savings component usually earns a money market rate of interest. You may also be able to alter your premium payments.

Variable Life Insurance

Combines death protection with a savings account that you can invest in stocks, bonds, and money market mutual funds. The value of your policy may grow more quickly, but you also have more risk. Additionally, if your cash value underperforms, your cash value and death benefit may decrease.

Variable Universal Life Insurance

You get the features of the universal life policy and the features of a variable policy. You have the investment risk and rewards as well as the ability to adjust premiums and death benefits.

Indexed Universal Life Insurance

Offers a cash value component along with a death benefit. The cash value can earn interest through tracking an equity index selected by the insurer, and can also usually be partially allocated to a fixed-rate account.

Guaranteed Life Insurance

Pros:

  • These types of policies help provide coverage for those individuals who may have a difficult time getting life insurance due to an existing illness or health risk.
  • Guaranteed issue means you will not have to take a medical exam or complete medical questions.
  • The death benefit is usually between $2,000 and $25,000.

Cons:

  • This type of policy is available for the primary insured only.
  • May be fully functional only after a period of 2 to 3 years.
  • If the insured passes before the waiting period, the beneficiary will not receive the death benefit. A beneficiary may receive premiums paid into the policy.
  • Age requirements, usually between 50 and 80 years old. Some are available for 45 to 85.
  • Qualifications can depend on your age and location.
  • Usually more expensive than the typical term and whole life because of the greater risk.

 

First Moves When Newly Diagnosed: Getting Ahead of the Financial Game

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As you will find out, cancer is an expensive disease. And as a result, cancer patients are more likely to find themselves burdened with financial toxicity. We recommend you learn about your disease and the ongoing treatment, including:

  • Prescription costs
  • Lab tests and procedures
  • Doctors involved in your care
  • Their practice locations
  • Healthcare travel requirements
  • All associated costs

Contact Your Health Insurance Company

Contact your health insurance company get to know your coverage. The earlier you can do this, the better off you’ll be in the long run. Then establish a budget to help you manage your cash moving in and out.

Identify Your Healthcare Contact Team

Find out who will be your contact team at your healthcare provider’s office. Introduce yourself to those people and get their contact information. It’s better to be prepared ahead of time than to go hunting in a crisis.

Stay Organized

Use Binders to Keep Records

Get a few binders to keep notes in as well as medical bills and EOBs. Getting organized ahead of time will pay off in huge dividends later.

Gather Employer Benefit Information

If you’re still working, get a copy of your employer benefit booklet. This will provide you with the information you will need in the event you must take time off for treatment as well as other benefits that your employer offers.

Review Insurance and Financial Planning

  • Make a binder to keep track of your medical bills and evidence of benefits (EOBs) so that everything is organized.
  • Review your life insurance and understand its benefits.
  • Work with a financial advisor to help you with your budget and ongoing financial needs and goals.
  • Find an advocate who can accompany you on appointments and who can take notes on your behalf.

Questions to Ask Your Healthcare Team

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It’s not always easy to know what questions to ask about your care or the care your loved one is receiving. On the following pages, you’ll find lists of questions organized by topic. These questions may be helpful at different times during your treatment. We recommend printing the list and keeping extra copies for your appointments.

To stay organized, use a binder to hold your questions and add some blank notebook paper for taking notes. Try to prepare everything ahead of your appointment. If you have a lot to talk about, think about calling your doctor in advance to ask for a little extra time or see if some of your questions can be answered during a telehealth visit.

Questions to Ask About Insurance Coverage and Medical Bills

  • Who handles concerns and questions about health insurance in this office or medical center? Reach out to your insurance carrier as well.
  • Will this person help me with my health insurance provider?
  • Will this person help me figure out my medical bills and the codes on the bills to make sure they are correct? Before paying bills, compare your bill with your Evidence of Benefits (EOB) from your insurance company. DO NOT pay the bill until you are sure the bill is correct.
  • If an insurance claim is denied, who can help me file a claim? You can find a lot of information on claim appeals on your EOB. Also reach out to a third party, triagecancer.org
  • Is there anyone who can help me organize my expenses, keep track of incoming bills, and plan my budget? Consider a patient advocate. Make sure they are certified. The cost is not covered by insurance. They are independent contractors.

Questions to Ask About Appointment Costs

Appointment costs should cover everything like seeing specialists, getting a second opinion, lab tests, X-rays, and other services to make sure you get the right care.

First, make sure you can get as much coverage in-network as possible.

  • How much is my co-pay for each doctor’s visit? First call your insurance company with the name of the doctor, treatment facility, and procedure and get a copy of the approval from your insurance company. Keep notes of the call, who you spoke with, the date and time of the call, and the outcome.
  • When is this payment due? This would be listed on the bill. If the bill is being challenged, contact your provider’s billing department and let them know ahead of time.
  • If I need multiple doctor visits, is there a policy where I can pay the co-pay only once or not at all (called a waiver)?
  • Do you offer payment plans? Call the billing department or check with the financial counselor at the treatment facility. Ask about hospital charity care.
  • Will I be billed separately for laboratory tests? Are they covered under my insurance? It would be a good idea to make sure that the lab that’s being used is in-network with your insurance plan. If not, see if you can go to an in-network lab.
  • Does my insurance plan cover other doctor visits, such as second opinions, and other specialists? Check with your insurance company to see if the referral or second opinion is in-network. And if not, would it be covered?

Questions to Ask About Costs Related to General Treatment

  • Who can help me estimate the total cost of the recommended plan including office, lab, and treatment facility visits?
  • If I cannot afford this treatment plan based on being underinsured or uninsured or treatment will be out of network, can we consider other insurance coverage options or treatment options that do not cost as much?
  • Are there pre-approvals required before getting any of the recommended treatments?
  • Do you have any financial conflicts of interest in proposing this treatment plan for me?
  • What expenses does my health insurance cover if I need to be admitted to the hospital? And will that hospital and treatment providers be in-network with my insurance plan? (Again, review your insurance or talk to a case worker at the treatment facility. Keep records of the conversation).
  • What expenses does my health insurance cover if I receive treatment as an outpatient? Call your insurer and be aware that emergency room doctors probably are not in-network and will be billed separately. The more preparation you do ahead of the treatment, the better off you’re going to be.
  • Are there ways to change my treatment schedule, if necessary, to work around my job or child care? If this is going to be an issue, review ADA and/or FMLA rules.
  • Will there be a co-pay for each treatment? Again, ask and get this in writing from your insurance plan.
  • Where can I get low-cost or free counseling or support to help me cope with my diagnosis?

Questions to Ask About Costs Related to Medication

  • What is my prescription co-pay for this drug? Check with your insurance company or financial counselor at the treatment facility.
  • Is this prescription a one-time cost, or will it be an ongoing expense?
  • Is there a generic version of this medication that I can use?
  • Can we regularly review my prescriptions to see if there are less expensive options?
  • For supportive medication that manages side effects, is there an over-the-counter medicine that has the same effect as the prescribed drug? Will it be less expensive?
  • Are there programs that can help cover the cost of my drug(s) for cancer treatment or side effects?

Questions to Ask About Costs Related to Clinical Trials

  • What expenses will I have if I join a clinical trial? Contact the clinical trial manager of the specific clinical trial to see what you will be responsible for.
  • What costs are already covered?
  • How do the costs of the clinical trial compare with the costs of the standard treatment? Does one cost more than the other?
  • Can I be reimbursed for any of the costs of the clinical trial?

Questions to Ask About the Costs Related to Family and Living Expenses

  • If I have problems covering basic expenses, such as food or heat, due to the cost of my cancer treatment, are there organizations that can help me?
  • Where can I get low-cost or free child or elder care during treatment?
  • Where can I get free or low-cost personal items, such as a wig, if needed?
  • Is there an organization that can provide low-cost or free counseling or support to me and my family?

Questions to Ask About Costs Related to Employment, Legal, & Financial Issues

  • Who can I talk to if I have lost income because of my treatment? If you know ahead of time, speak to your HR department about protecting your position (ADA, FMLA).
  • If I have on-the-job difficulties related to my cancer, who can help me understand my legal rights?
  • If my caregiver has difficulties at their job because of my cancer, who can help us understand our legal rights?
  • Where can I find out if my medical and related expenses can be deducted from federal income taxes? (Refer to your tax professional).
  • Where can I get low-cost or free help with estate planning and legal issues, such as writing my will or granting a power of attorney?

Questions to Ask About Costs Related to Caregiving, At-Home Care, & Long-Term Care

  • Are there any ways to change my treatment schedule, if necessary, to work around my care partner’s job and schedule? (ADA and FMLA).
  • Can we talk about the costs of care if I do not have a family member or friend to go with me to appointments or to care for me at home?
  • Are there local organizations that can give low-cost or free home care or other services?
  • Should I plan financially for long-term medical care, such as a nursing home or hospice care?

Resources:

Asking for Financial Assistance Opportunities

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If you find you are uninsured or underinsured and cannot meet your financial obligation for paying medical bills or paying for prescription drugs, you may have options.

Opportunities for Assistance

  • Find out what your prescriptions are and if any biosimilars may be less expensive than brand-name drugs.
  • Know your insurance.
  • Where are you getting treatment? Are the facility and the doctor in-network for your insurance?
    • What kind of assistance can the hospital give you to pay for your treatment, such as hospital charity care, or an arranged payment program?
    • Make sure your providers are in-network, and if not, see if you can get an exception from your insurance company in writing before getting the treatment or prescription.
  • Check with the pharmaceutical company to see if they have Patient Assistance Programs for that particular drug.
  • Depending on the cancer you have, check for co-pay, co-insurance, deductible, and premium financial assistance through non-profit organizations.
  • Other financial assistance can include help for travel costs or lodging associated with medical treatment.
  • Understanding and finding financial resources for clinical trials: Refer to your insurance for coverage of clinical trials.
  • Medical supplies and vehicle modification
  • Local and State Financial Assistance: There are financial resources that may be available to you based on your financial circumstances. Please refer to these links to find the resources and the criteria for applying:

Tips When Requesting Financial Assistance

Keep a list of pharmaceutical companies and/or nonprofit organizations where you have requested financial assistance. A binder can help you keep this organized and in one place.

Keep a record of:

  • Name or organization
  • Phone number
  • Address
  • Date your assistance starts and ends
  • Amount of grant or assistance
  • What medication or insurance co-pay or deductible it covers
  • Requirements to keep assistance/grants in force

Keep a good record of who you spoke with as well as the time and date of the call.

Keep notes about the purpose of the call. If they make promises of assistance, ask that a copy of that promise be sent to you immediately either through email or a hard copy.

See More from the Financial Resource Guide

Resources:

conquercancer.org

medicare.gov

triagecancer.org