Complex CHD and Family Finances

As Additional Ventures continues working towards our mission of curing single ventricle heart disease, we want to take every opportunity to improve the lives of the patient and family community. Below, you’ll find reflections from our Director of SOURCE, Diane Pickles, and helpful information and resources you can use to navigate the financial challenges single ventricle heart disease presents.

Resources and Advice for Navigating the Financial Burden of Complex CHD

Below, you’ll find recommendations for financial resources and advice on navigating these diagnoses. These recommendations have been provided by two professionals who practice in children’s hospitals that treat large numbers of complex CHD patients: Meghan Sullivan, MSW, LICSW (Clinical Social Worker in the Cardiovascular Program at Boston Children’s Hospital) and Katie Dodds, MSN, CRNP (Clinical Program Manager of the Fontan FORWARD Program at the Children’s Hospital of Philadelphia).

While this is not a complete overview of resources, we hope it serves as a useful starting point.

1. 1. What insurance options exist for families?
   2. Who should families speak to for help in navigating the financial burden of complex CHD?
   3. When is the best time to have these conversations?
   4. What financial assistance resources might be available?
   5. What should adult patients and parents of soon-to-be adult patients know about financial planning?

What insurance options exist for families?

Several types of insurance plans are available, depending on income and employment status:

1. Employer-sponsored plans: These are health insurance plans made available to employees through their employer.
2. Health Insurance Marketplace: These are health plans created by the Affordable Care Act (ACA) where individuals and families can purchase health insurance if their employer does not provide insurance coverage or if your employer’s plan does not meet affordability or minimum value standards.
3. Medicare and Medicaid: Medicare is a government-funded insurance program for seniors and some people with disabilities. Medicaid is government-funded insurance for people who meet lower-income eligibility guidelines and people with disabilities. Eligibility guidelines vary by state, but complex CHD diagnoses often meet guidelines as a disability.

Who should families speak to for help in navigating the financial burden of complex CHD?

1. Hospital social workers: Most children’s hospitals have dedicated social workers in their cardiology programs who are best suited to provide support and guidance. If your hospital doesn’t have a social worker in the cardiology program, you can reach out to any hospital social worker.
2. Pediatricians: Pediatric practices have vast experience helping families with many aspects of navigating care for children with complex medical needs.
3. Employers: If you are insured through your employer, be sure you understand your insurance options and coverage deeply. It is important to understand benefits for “in-network care” and “out-of-network care” and to understand what providers and hospitals are in-network. Out-of-pocket costs will be higher when using out-of-network providers. In addition to medical benefits, ask your employer about paid sick leave, family medical leave, and disability leave.

When is the best time to have these conversations?

Families should reach out as early as possible and as often as needed. Some services (such as supplemental Medicaid) are easier to secure when you apply early in a child’s life.

If your child is diagnosed before birth, it’s important to learn about your insurance coverage and what resources will be available to you once your baby is born. For example, knowing whether the surgical center and providers you plan to use are in-network or out-of-network is essential.

Many private insurance plans allow for a change in insurance outside of annual enrollment periods for a significant life event, such as the loss of a job or the birth of a child. It is also helpful to look into the employment-related benefits you might need to use, such as family medical leave or short-term disability.

Also, knowing what resources are available before an upcoming surgery or before a teen’s transition to adult care can help you make more informed decisions.

What financial assistance resources might be available?

Hospital-based support

• Vouchers: Ask about meal and parking vouchers at your hospital. Voucher availability and criteria for who is eligible varies by institution.
• Financial aid for out-of-pocket costs: Hospitals can provide financial assistance to families for costs not covered by insurance. This type of aid is based on income.
• Payment plans for hospital billing: Hospitals can work with families to develop repayment plans to prevent bills being sent to collections. Even if you can only pay a very small amount monthly to show a good faith effort, this can go a long way to avoiding collections. However, you would need to have a conversation about good faith payments ahead of time.

Insurance-based support

In some states, children with complex CHDs qualify for supplemental Medicaid, regardless of parental income. Supplemental Medicaid is a type of secondary insurance. Parents can keep their private insurance, which would be billed first, with Medicaid covering expenses not covered by the private insurance. These benefits do vary state by state and are at funding risk each year, so ask about the benefits in your state.

Medication payment support

Some pharmaceutical companies offer discount programs for medicines not covered by insurance or medicines with very high co-pays.

Other out-of-pocket costs support

Some foundations and organizations provide financial assistance for out-of-pocket costs, such as housing (rent or mortgage) and utilities. Many utility companies offer relief for families with complex medical needs to prevent shut-off of essential services like heat.

Other types of support

Many families find that friends, family, and members of their community are eager to offer support such as meal delivery, help with transportation and accommodations, home modifications, and caring for siblings.

What should adult patients and parents of soon-to-be adult patients know about financial planning?

Financial planning as part of the transition to adulthood is essential. Examples of important issues to consider include:

• The type of education and future employment opportunities available to the young adult patient. This will inform the types of insurance they may be able to get as an adult.
• Preparing for the transition to adult care — e.g., understanding insurance billing, applying for medical financial aid, and how to talk to employers about their benefits and need for time off to attend to medical care, without jeopardizing their employment.

Adult patients have access to different types of insurance coverage based on age, employment, and income.

• If a parent has private insurance, the law allows the young adult to remain on the parent’s plan until age 26. This is often the best financial option.
• If an adult has a low income and/or does not have access to private insurance through an employer, they may qualify for Medicaid or a Health Insurance Marketplace Plan.
• If an adult patient needs extended time off from work to attend to medical needs (such as having a surgery that will require several weeks out of work for recovery), they are eligible for family medical leave through the U.S. Family and Medical Leave Act (FMLA) which will protect their job and health insurance for up to 12 weeks.
• If an adult patient becomes unable to work due to their complex CHD, they may be eligible for Supplemental Security Income (SSI).

Adult patients have to navigate more than just health insurance when it comes to finances and their CHD care.

• As an adult patient who is working, it is important to talk to your employer to understand the benefits you have access to, including insurance and time off from work to take care of your medical needs. It can be challenging to determine who to speak with and how to navigate these conversations safely and comfortably. Your clinician or cardiac social worker can be helpful.
• Even if an adult patient has insurance coverage, out-of-pocket costs can be significant. Asking about financial assistance for medical bills and proactively setting up payment plans can reduce a lot of anxiety. Even if financial aid is not available, many institutions are willing to accept small monthly payments as a sign of “good faith repayment.”