We’re taking a look at how we can better gear up for the financial stress that will come our way when paying for CHD. We will analyze the topic through the eyes of Akina Takahashi, a Heart Center Social Worker. She offers us great advice on how to work with various professionals and organizations to better prepare for the medical bills.
Caring for a child with congenital heart disease or learning to manage your own healthcare as an adult with CHD can be stressful and scary. In addition to mastering medical lingo, learning to navigate the health system, and adjusting to long term physical and emotional care needs, all other life demands remain present and a source of stress. In my interactions with families, finances are one of the most common stressors discussed, often because financial strain is exacerbated with a diagnosis of CHD. Balancing all of this doesn’t have to be done alone. In reaching out to your support network (CCHD!), social workers, friends and family there are a wealth of resources available that might lighten your load allowing you to concentrate on everything else on your plate.
Here are some resources that I like to highlight in my discussions with patients and families.
Medicaid: is a healthcare program that assists low income patients/families with insurance coverage and results in minimal to no out of pocket expense. Often your state’s Medicaid program will have tiered options for families dependent on income where you might be responsible for some out of pocket costs associated with accessing care, though this remains typically more affordable than other coverage options.
Of note, many states offer expanded coverage into adulthood. If you recently turned 18 years old and are looking into options or an adult with CHD who is financially burdened by the cost of your healthcare, I’d encourage you to look into if your state provides expanded coverage and if you fall within the income eligibility limits. Be advised that the income eligibility for children is different and wider than if you are applying as an adult.
An example of coverage options via Medicaid for families in Illinois:
- A family of 3 can have a household income of up to $2,501/month and qualify for traditional Medicaid which does not require co-payments or monthly premiums.
- Looking at the tiered levels, a family of 3 can have a household income of up to $5,411/month and still qualify for coverage, though this coverage requires a monthly premium of $40/month per child and a maximum co-pay of $500 annually per child.
If you are interested in applying for Medicaid, visit your local DHS office for more support.
Affordable Care Act: This coverage is different from Medicaid in that it is not income dependent and often a good choice for those who are self-employed or unable to access employer sponsored coverage. Purchasing coverage through the marketplace requires monthly premiums and will have out of pocket costs associated (co-pays, deductibles).
If you are interested in purchasing a marketplace plan, visit www.healthcare.gov
SSI: You or your child’s CHD could qualify for disability payments called supplemental security income (SSI) managed through the Social Security Administration. See recent CCHD blog post here for more information.
SUPPORT TO ADDRESS YOUR MEDICAL BILLS:
If you are stressed with medical bills, I’d encourage you to reach out to your medical social worker who might be aware of local agencies that provide financial assistance for medically related expenses.
A national organization that I typically highlight with families is the United Healthcare Children’s Foundation that provides financial assistance related to medical costs for families with commercial insurance.
Additionally, consider visiting your medical facility’s financial office to find out if there are patient assistance programs or payment options. Many times, healthcare facilities can discount the cost of care if paying the bill in a certain time frame or provide financial assistance for patients/families based on income.
If you find yourself without insurance coverage, GoodRx.com provides coupons for common medications to reduce the out of pocket expense. Also, Walmart has a great $4 prescription list that offers a month’s supply of medications as low as $4. Many times the pharmaceutical company has patient assistance programs discounting the cost of the medication based on a family or patient’s income.
Linking with care coordination is a great way to access more support for you or your child’s heart condition. A care coordinator’s role is to serve as a medical home and navigate families through the healthcare system. An added benefit of connecting with a care coordinator is that they help ensure the appropriate utilization of medical specialists. For example: your care coordinator should be able to interface with your child’s medical equipment company if you’ve been unsuccessful to confirm continued access to medical supplies and prevent the risk for hospital admission or an outpatient visit due to lack of supplies.
COPING AND SUPPORT:
Learning to accept help from friends and family can be challenging. By opening yourself up to support from loved ones in the form of ready-made meals or a lift to the doctor’s office is not only a lovely way to reduce your everyday demands, but can also unintentionally help free up funds to direct towards medical expenses. If finances or any other stressor is overwhelming you to the point where you are having difficulty coping (trouble sleeping, changes in eating, persistent worry, social isolation) and interested in counseling options, please note that many therapists provide sliding scale payment options to allow you to get the support you need. Consider reaching out to your insurance plan, social worker or PCP for further assistance with linkage.
As you or your child journeys through the CHD world, please know that there is always support available from your medical team and the community.
Akina earned her master’s degree in social work from the University of Hawaii at Manoa and attended the University of San Diego for her bachelor’s degree in psychology. Akina is the Heart Center Social Worker at Ann & Robert H. Lurie Children’s Hospital of Chicago, where she is designated to provide support to cardiac patients and families in the Heart Center’s outpatient clinics.