Inside Out

Our last August post is a throwback! Today’s guest blog comes from Stephanie, who shares how her priorities have changed, since her daughter, Maggie, was born with a heart defect.
This was originally posted in May of 2014. 

 

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I used to really care about elections and politics.  As a political fundraiser, I took it personally if friends or even strangers supported my opponent.  Funny thing is, they were never MY opponent, they were the person running against the person who paid me to help them raise enough money to compete and hopefully win an election.  I jumped from campaign to campaign, always eager to fight and argue and sometimes sacrifice relationships with friends and family members.  Nothing was more important than my job, my reputation and the campaign I happened to be working on.

I worked for a sitting governor during my entire pregnancy in 2011.  I sat in an attic office, talking and complaining and making sure that everything I touched went well.  I raised a lot of money and watched my feet and ankles swell as I paced around at fundraising events.  I took pictures of my “kankles” afterward.

Our daughter was born on January 11, 2012; she was pink and screaming with a shock of dark hair.  I did not enjoy pregnancy one bit, so I was so relieved she was here and I could eat a big dinner.

During the first exam, after the first bath, probably while I was begging for a dinner menu, the nurse said, “She has a heart murmur….But lots of babies do and usually it’s nothing, most close on their own.  No big deal.  The pediatrician will listen and I am sure it will all be fine.”  I shrugged and said OK, never once thinking there was anything wrong.  Her heartbeat had been so strong the whole time I was pregnant and I had such a tough nine months – I was sure nothing was wrong.

The next day, the pediatrician examined Maggie and commented that her murmur was a “3 on a 1 to 6 scale.”  He ordered an echo, just to figure out what was going on.  I will never forget my mom piping up from across the room, “Her sister had Tetralogy of Fallot!”

Tetralogy of Fallot sounds like gibberish if you’ve never heard it.

I never knew my sister’s defect had a name.

I thought she just had a hole in her heart that they fixed.

The doctor paused upon hearing my mom’s comment and I don’t really remember much other than taking a shower and talking to my sister about child birth while the techs did an echo on my baby, down the hall.  My husband and mom walked with her, I wasn’t overly interested because I just knew nothing was wrong.  I walked over and looked in the window while they did it but I just couldn’t bring myself to get upset.

Later that afternoon, around 5:15 or so, my husband and I were in our room with our new baby.  For some reason she and I were skin to skin, maybe we had just finished nursing, when the pediatrician came in the room.

I only remember him walking in and around to the bed where we were sitting.

I do not remember what he said but as he said it, I felt my soul turn inside out.  There is no other way to describe it.

I have never been the same.

The love I feel for my child is beyond comprehension.  I have been more scared than any parent should ever have to be.  I felt something deep inside me rip open.

I have never been the same.

Now, 28 months later, Maggie has had 2 heart surgeries and is functioning normally.  You would never, ever know she had heart issues.  She goes to Montessori school, jumps and runs everywhere and loves her Daddy.  She loves me too, but it’s a different kind of love.

I am back working in politics but I don’t care the way I used to.  I care about Maggie and my husband and our family, but that’s about it.  I care about helping other heart baby families know they are not alone and I have such deep empathy for parents of children with any kind of issue.

Politics is fun but I am just so blessed and thankful that my baby is OK.  I am not the same as before Maggie’s diagnosis and I think that’s a good thing.

 

Stephanie Dorko Austin began her career working for former White House Chief of Staff Erskine Bowles both times he ran for U.S. Senate (2002 and 2004).  She was Finance Director for State Treasurer Richard Moore’s gubernatorial campaign in 2008, helping to raise just over $5M for the primary election.   During the 2010 cycle, she worked for U.S. Senate candidate Cal Cunningham and N.C. Senate Majority Leader Martin Nesbitt.  She was Deputy Finance Director for Governor Bev Perdue’s re-election campaign in 2011.  She has also worked as a fundraiser for State Treasurer Janet Cowell and U.S. Senator Chris Dodd of Connecticut.

Stephanie’s non-profit experience includes serving as Vice President of Government Affairs for the Charlotte Chamber of Commerce and Development Director at the Council for Entrepreneurial Development and the NC Advocates for Justice.  

She currently works for the Cooper for North Carolina Committee and serves on the Board of Advisors of the Jamie Kirk Hahn Foundation and the Board of Trustees of Follow the Child Montessori School.  A Phi Beta Kappa graduate of Trinity College in Washington, DC, Stephanie and her husband, Will, live in Raleigh, NC.

Conquering CHD… And Medical Bills with Akina!

This week we will continue to look at how we can better gear up for the financial stress that will come our way in 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 (PCHA!), 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.

INSURANCE:

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

DISABILITY BENEFITS:

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 PCHA 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.

MEDICATION:

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.

CARE COORDINATION:

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.

If you are interested in care coordination services, inquire with your insurance provider, PCP office, or medical social worker for appropriate linkage.

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.

Congenital Heart Disease in an Era of High Deductible Health Plans

Hello readers! This week, we have a fantastic post written by Mr. Kinney of the Herma Heart Institute, on how patients and families can gain a little piece of mind and take control when the medical bills are rolling in. The journey of CHD can be overwhelming in many different ways, and medical bills is a huge component of that. This post provides a step-by-step process that can alleviate some of the stress that families may have when it comes to those daunting bills. 

One Step at a Time:

Despite being the most common birth defect nationally, congenital heart disease can be scary… and isolating. Whether you as the reader are the patient, or your child is the patient, the physical and emotional rollercoaster can be relentless: the shocking realization that something is wrong, a painful journey to determine what options are and who is going to be your partner in this journey, the fear and unknown heading into any type of intervention, and an arduous recovery in even the best of circumstances. Just as things begin to settle down, some new mail starts to arrive. Medical bills.

This could be a hospital bill, a physician practice bill, a combination, or even a third party vendor bill for some diagnostics, lab work, or medical equipment. Perhaps it could even be an explanation of benefits from your medical insurer (which briefly shows what was billed for, what the healthcare provider is allowed to bill you, what the insurance company is covering and what is your responsibility as a patient/parent), well before you have any idea on the billing. After pouring all possible energy into taking care of yourself or your child, the aftermath can be overwhelming and seem impossible to navigate. Taking things one step at a time can help.

Take Good Notes:

Often times, this type of journey is completely unexpected and one is well on their way through the healthcare journey before they even think of the billing issues. I was recently at a family advisory committee meeting, and heard a mother giving this advice to another mom while we waited for the meeting to start. She detailed her struggles having been down this road before, and is now quick to verify names, confirmation numbers, authorization numbers, dates, and even company she is actually talking to regardless of what number she dialed (for the all too common third party). This doesn’t necessarily solve things from a financial perspective, however it does make it less painful to navigate.

Start With a Phone Call – Insurer:

As early in the process as possible, call your insurer to explain the situation. If this is before you’ve had any sort of diagnostics or intervention, great, but if not, this is still a useful step. Here you can speak to someone who can refresh you on the specific limitations of your plan; perhaps like most, you didn’t pay attention to any details regarding medical conditions you didn’t have, and now with this recent diagnosis you or your child needs additional services. Placing a call to your insurer will provide you with a refresher on deductibles for individuals and families, networks (ie: hearing from the facility that they are in network, only to find out they are considered tier 3), and any other limitations related to the specific diagnosis, (ie: only one outpatient echocardiogram covered per six or twelve month periods).

Explanation of Benefits and Bills:

After treatment, you will receive an explanation of benefit from your insurer and the bills from the hospital and/or providers and/or any third party vendors. Use these items to help you advocate for yourself. . A quick check to make sure the explanation of benefits matches the bill is always helpful to understanding if things are misaligned. Save these statements as they come in, even if there are multiple. As necessary, it may be useful to request a detailed bill from the hospital, which may give you more details on CPT/billing codes used or details on procedures performed which may have limitations in your plan. When speaking with your insurer, using the specific codes is helpful again to understand limitations, denials, or authorizations.

Don’t Worry About your Doctor or the Hospital:

It is not uncommon to form a lasting bond with the care team that saves yours or your child’s life. This doesn’t mean that you can’t push back or question bills, point out something that seems inaccurate, or request clarification. Often times, your care team is actually ready and willing to assist and may be able to link you up with information from their side (i.e.: authorization numbers, details, etc.) and very likely pushing both the health system as well as the insurer to keep things accurate and fighting to deliver the right care at the right time. While working on a particularly complicated bill with a parent a few years ago, we discovered an error where the billed amount didn’t match the explanation of benefits due to insurance shifting with the parent’s new job. After working it all out, and getting patient accounts agreement to send a revised bill which matched the explanation of benefits, the parent asked to talk to me privately. The parent was very concerned that their doctor was going to hear about our discussion and feel like the care team did something wrong or that the patient didn’t value their efforts to care for the family. This concern is incredibly common, however, most of the time, the care team will have no idea that there is an issue with billing, and even if they do, it is much more common that they are an advocate for the patient and family having timely and accurate billing.

Deductibles, Max Out of Pocket, HSAs, Flex Spending Accounts, and Government Aid:

Whether healthy or diagnosed with a chronic condition, it is additionally helpful to understand your health plan deductibles, max out of pocket expenses, and what access you have to health savings accounts (HSA’s) or flex spending accounts. A deductible is an amount the patient must pay before the insurer begins to pay, and is often coupled with a maximum out of pocket before 100% of expenses are paid. A simplified scenario might be a $5,000 diagnostic test, for a patient whose family has a $4,000 deductible, at which point a 90% coinsurance rate kicks in from the insurer, until the patient’s family hits their maximum out of pocket expense of $5,000. When we do the math in this situation, the patient would be faced with a $4,100 bill if their family hasn’t had any medical bills yet that year; $4,000 for the deductible, and an additional $100, as the insurer would only be required to pay 90% of the remaining $1,000. After an additional $9,000 in health care bills, the patient would pay an additional $900 in out of pocket expenses, at which point, there would be no further obligations to the family. This can be a staggering amount to pay for most families, hence, it is useful to explore with your employer if there is any access or matching to health savings accounts or flex spending accounts. Health Savings Accounts (HSA’s) allow individuals to divert $3,450 and families $6,900 of tax deductible income to special accounts designated just for medical expenses. If your employer does not offer a High Deductible Health Plan with a HSA, individuals and families can still pursue a flex spending account (FSA) on their own. These funds are set aside to ensure funds are available for the patient responsibility aspect of bills – while they aren’t always enough to cover the deductible, these funds can help accommodate high deductible impact. In our example above, a patient who had contributed $5,000 to their HSA would be able to use their HSA to cover all of their family’s medical expenses for that year. Further, while every state has different rules, it is quite common for a patient or family to also qualify for secondary government aid like Medicaid, even for working individuals or those who do not qualify outright for government aid based on income. It is worth exploring in your state your eligibility and especially if there is a Medicaid spend down policy, which lets one deduct medical expenses from their income to demonstrate need. This secondary coverage would kick in for all items designated as “patient responsibility” and further reduce the burden to patients and families.

Work with your doctor or provider on timing of tests (sometimes to space out, other times to occur after employer match, etc):

After working through this tedious process, one begins to have an understanding of the ins and outs of their plan, their medical condition, their benefits package, and even their government aid eligibility. At this point, one might discover that they are only allowed one diagnostic test per year, and yet, their provider has scheduled one every six months. Talk to your provider. Sometimes, they are willing to shift the testing to once a year. Conversely, if they feel the medical condition is such that this is required, they are willing to provide additional information to the insurance company to help them understand why there should be an exception in this case. Insurers often provide these exceptions, but may need additional information from your provider. Likewise, a test, procedure, or visit may be required regardless to address the medical situation at hand; in these circumstances, many work with their providers to schedule after their employer match, or later in the year to allow the HSA to fill up some more. The medical situation may not always allow for this flexibility, but without partnering with your provider and asking, they wouldn’t know to even try.

Other options include calling the hospital and asking if they are willing to settle for a lower amount or work out a payment schedule.

All things considered, it is not uncommon to work through all of the above, and still have a large bill on hand. At this point, call the number on your bill, and explain your situation. Many health care organizations will work with patients to understand financial need and income levels, and from there work on either a negotiated settlement amount or a payment plan.

Give yourself permission to work through these one step at a time. Healthcare finance is complex, in large part due to the fact that each and every interaction can be so wildly different than the next, even for patients with the same condition. Push back, question, advocate for yourselves, and help your care team understand the limitations of your health plan – at the end of the day the entire health infrastructure is here to take care of the patients, and even the billing office can be a crucial partner in managing one’s serious health condition.

 

Aaron Kinney was born in Oakland, California. He completed his undergraduate work at the University of California at Davis where he received a Bachelor’s of Arts degree in Political Science with a minor in history (2005). He holds a Master of Science degree in Management from New England University (2009), and a Doctor of Business Administration from the University of Wisconsin – Whitewater (2017). Aaron also served as a Medical Service Corps Officer in the United States Army from 2005-2012, serving as an aero medical evacuation officer, and earning a bronze star each for his deployments in Iraq (2007-2008) and Afghanistan (2010-2011). Aaron is currently the Executive Director of the Herma Heart Institute at the Children’s Hospital of Wisconsin in Milwaukee, Wisconsin, and a credentialed Fellow of the American College of Healthcare Executives.

Qualifying for Social Security Disability Benefits With a Congenital Heart Defect

Last week, we heard a patient’s story on the financial difficulties and challenges that come with CHD. This week we hear from another heart warrior, who comes with a hopeful message. Deanna Power shares her expertise with PCHA, and how patients of all ages may qualify for SSI.

If your child has a congenital heart defect, he or she may be eligible for Social Security disability benefits. The Social Security Administration (SSA) offers monthly financial aid for people of all ages who have serious conditions or illnesses. A CHD will not automatically qualify with a diagnosis alone, but many children with heart problems are eligible for assistance.

Technical Eligibility for Disability Benefits:

All children under age 18 will qualify for Supplemental Security Income, or SSI. These benefits are only awarded to people with a severe financial need. This means that your income will be evaluated on behalf of your child. While the income limits are strict, the good news is the larger your family, the higher your overall monthly income threshold will be.

For example, a single parent with one child couldn’t earn more than $38,000 per year while still having a child qualify for SSI. A two-parent family of five could earn more than $55,000 per year and still be eligible. You can view a chart on the SSA’s website to determine your family’s specific monthly income limit.

Unfortunately, technical qualification is very challenging for SSI, and is the top reason for children with CHDs to be denied Social Security benefits. The good news is that once your child turns 18 your income will no longer be recorded by the SSA, even if your child still lives at home.

Medical Qualification for Disability Benefits:

The SSA maintains its own medical guide, known colloquially as the Blue Book. The Blue Book contains hundreds of listings that can potentially qualify for disability benefits. All listings for cardiovascular disorders can be found in Section 104.00 of the Blue Book. There are listings for heart failure, recurrent arrhythmias, and congenital heart disease. Here are some ways a child with congenital heart disease could qualify:

  1. Your child has hematocrit of 55% of greater, measured at least twice within a one-year timeframe, OR
  2. Your child’s blood/oxygen level is less than 90%, or your child’s resting arterial PO2 score is 60 Torr or less, OR
  3. Your child has dizzy spells, fainting, or other symptoms directly related to cyanotic heart disease, OR
  4. Your child is completely unable to exercise due to insufficient cardiac and pulmonary function

There are more straightforward listings in the Blue Book as well. For example, any child with a heart transplant will automatically qualify for benefits for at least one year after the procedure. A child on the wait list for a transplant will also always medically qualify under at least one Blue Book listing. Finally, any infants less than a year old who have a “life-threatening” heart problem requiring surgery will qualify until their first birthday (or longer), given that doctors expect the condition to continue to be disabling due to the recovery time or impairment after surgery.

The Blue Book listings for cardiac problems are complicated and best reviewed by medical professionals. Fortunately, the entire Blue Book is available online, so you and your child’s cardiologist can determine if your child might be eligible together.

Starting Your Application:

If you are applying for SSI benefits on behalf of a child, you’ll need to do so at your closest Social Security office. Call the SSA toll free at 1-800-772-1213 to make an appointment to apply in person. Once you complete the application, you should hear back from the SSA regarding your child’s claim within five months.

Once approved, you can focus on what’s important: your child’s health.

 

Helpful Links:

 

Deanna Power is the Director of Outreach at Disability Benefits Help, an independent organization dedicated to helping people of all ages receive Social Security disability benefits. She’s currently thriving with Ebstein’s Anomaly w/VSD and is forever grateful for the Adult Congenital Heart Program at Boston Children’s Hospital. If you have any questions on how you or your child could be eligible for Social Security disability benefits, she can be reached at drp@ssd-help.org

CHD365 – Recurring Giving Program

Welcome to CHD365!

 

 

 

 

 

 

 

 

 

CHD365 is our recurring giving program.  Your contribution through this program helps us to give knowledge, a voice and hope to hundreds of thousands of people impacted by congenital heart disease.

 

WHY GIVE A RECURRING DONATION?

Recurring donation benefits both you and PCHA. Here are just a few examples:

  • Convenience: A recurring gift is deducted monthly from your bank or credit card account.  You don’t have to think about. You can easily change the amount or discontinue the donation at any time.
  • Stability: A monthly donation provides consistent funding to our education, support, research and awareness programming all year long. By giving consistently, throughout the year, it helps with budgeting.  Not only is it predictable for your check book, but it helps us when planning our activities.
  • Access: By joining our CHD365 program, you will receive exclusive updates and opportunities throughout the year. Get in-depth insight into how your money is making a difference in the lives of others.

 

How do I join CHD365?

It’s easy! Start by clicking the image below. This will direct you to our donation page.  As you make a donation, simply select recurring.  That’s it!!