In the early hours of July 28, 2017, Senator John McCain voted to preserve the Patient Protection and Affordable Health Care Act, better known as the “ACA” or even much better known as “Obama Care.”  There are two key provisions in this act that are of particular importance to our group: 

1. Insurers are mandated to enroll young adults until age 26 on their parents’ plans.

2. It is illegal to charge more for, or refuse, coverage for preexisting conditions. 

The threat of the ACA being overturned caused me to apply for Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) for my then 18-year-old son who has a diagnosis of APS Type 1.  My reason for doing this was that if a person is approved for both SSDI and SSI benefits, they will automatically qualify for Medicaid benefits (although some states do require a separate Medicaid application as part of the qualification process). It is also possible to receive Medicare benefits as well, but there is a 24-month waiting period before the SSDI beneficiary can begin to have Medicare coverage.  

In this post, I will share with you the challenges and successes my family and I endured and celebrated as we navigated the complex and confusing world of insurance and disability benefits.  Each of us is different.  Our experiences with this process will be too.  While I am not a lawyer or benefits expert, I hope you find some useful information here as you consider the best options for yourself or your loved ones.  I’d be pleased to communicate further on this topic with anyone who is interested.   You can reach me here.

Click here and here for more information regarding the application process and benefits. While SSDI first becomes available at age 18, before that time, a child can only qualify for SSI.  Click here for an explanation of the key differences between adult SSDI/SSI and child SSI applications.

 Apart from the SSDI/SSI process, typically, Medicaid eligibility is determined by a family’s income (modified adjusted gross income or MAGI).  However, if a parent or caregiver is interested in obtaining only Medicaid for a child without going through the SSI application process, some states will consider the child’s income status to be considered separate and apart from the family in order to become eligible to receive Medicaid.  Here’s how this works: if an individual is determined to be “medically needy” then “the household consists of only of the individual.”  (There are also exceptions for blindness and disability but “medically needy” is the appropriate category for our population).  These individuals are known as “MAGI-excepted,” and are eligible to receive Medicaid based on only their finances.  Click here for further information on the law governing this process. 

As mentioned before, under the ACA, a young adult can stay on their parents’ insurance until age 26. If the young adult is determined to be disabled, however, there is a process available through most insurance companies that allows the person to remain on their parents’ insurance even after the age of 26.  I recently requested and submitted my insurance company’s forms to obtain this benefit.  My employer’s H.R. department recommended I do this as soon as possible even though my son won’t go off my insurance for another couple years.  

As a general rule, whether it’s applying for SSDI or SSI or for MAGI-excepted status, I’ve found it’s a good idea to begin the application process early because the certification process can take a while.  Included in the forms that are submitted as part of the application process are waivers that allow the certifying entities involved access to medical records and physicians to confirm statements on the application are accurate.  This process obviously takes time.  However, the good news is that benefits, if and when awarded, should be paid retroactively and be dated from the time of receipt of the application.

A quick word about SSDI.  The word “disability” is pejorative, dated, and inaccurate.  As many of you know, I have the pleasure of working with blind students.  This week, I took a student who is physically challenged on tours of three of our local colleges. I was pleased to see that in all of these schools, what was formerly known as the office for “Students with Disabilities” is now called “Student Accessibility Support.”  In a similar fashion, campus maps no longer label parking areas as “handicapped,” but rather use the term “accessible.”  While the distinction may seem small, its impact is significant.  Notably, the use of the word “accessible” comments on the thing, rather than the person.   

SSDI benefits are provided to help level the playing field – they are intended to make health insurance more accessible and provide an additional monetary benefit that can be used to help cover the many extra medically related costs most of us bear.  Medicaid will even cover the cost of over-the-counter products when prescribed by a doctor.  (Calcium tablets, anyone?)

The application process may seem daunting, but in my experience, it was well worth it.  When completing the application, be sure to list each APS Type 1 manifestation separately (e.g., hypoparathyroidism, adrenal insufficiency, hepatitis, etc.) along with each and every treating physician, rather than just listing a diagnosis of APS Type 1 and the name of one primary care physician or specialist.  Most people have no idea of what a diagnosis of APS Type 1 encompasses, so it is to your advantage to explain the extent of the disorder in detail. 

To begin the application process, I scheduled an in-person appointment at our local Social Security office to ensure face-to-face contact. During the interview process, I made sure to mention the APS Type 1 Foundation and the work of the NIH team, specifically mentioning 2 research articles (one by Dr. Lionakis, et. al. and one by Dr. Kämpe, et. al.) which give a not-too-technical overview of APS Type 1/APECED. The caseworker actually pulled up the Foundation website as we spoke to gain a more thorough understanding of the condition.  Because the application process is involved, and as we are often somewhat overwhelmed with the challenges presented by APS Type 1 on a daily basis, it may be wise to enlist friends or family to help with the application process.

Another difficulty that many of us face occurs in situations where, even if we have private insurance, our insurance company refuses to cover a treatment, a medication, etc.  A few years ago, our insurance company denied coverage for a hospital stay for removal of my son’s wisdom teeth (which they viewed as an outpatient procedure). I appealed and was denied three times despite providing documentation from the NIH explaining the need for hospitalization for procedures involving stress.     After the third denial, I visited the New York State Attorney General’s website and filed an online complaint against the insurance company. I heard back from the AG’S office within 36 hours, and a week later, I received a letter from my insurance company saying they would cover the cost of hospitalization “this time” (I assume this means that if my son’s wisdom teeth grow back and need to be removed a second time, I’ll have to repeat the appeal process). I happened to share this experience with a friend who was fighting with her nephew’s insurance company on two separate issues.  She contacted the NYS AG’s office, heard back from them within 36 hours, and within a week the insurance company relented on both matters.  

I’ve learned too that  there are private companies that will act as mediators between an individual insured and their insurance company for a fee.  Surprisingly, many insurance companies also provide a somewhat similar service by offering the assistance of a “nurse advocate” without cost.  On several occasions our insurance company reached out to us (I assume a string of hospital stays triggered their actions) and offered us this service. The nurses we dealt were helpful in getting the insurance company to cover the cost of name brand medications rather than their less expensive generic equivalents.

I encourage you to utilize all available resources. If you’re experiencing an insurance or benefit issue that is seemingly insurmountable that’s of a local nature, you might consider contacting your hometown newspaper or local news channel; if it’s a matter concerning an entity that’s regulated by the state (like an insurance company or hospital), contact your state’s attorney general office; if it’s an issue regarding federal benefits like SSI or SSDI, contact your local congressman as well as your state senators.  Be persistent, document everything in real time, and be fearless.

A few final thoughts. If, at some point, college enters into the picture, it is prudent to inquire if tuition insurance is available for purchase.  This type of insurance costs several hundred dollars a year, but if withdrawal from school is necessary due to medical reasons, it will pay for itself many, many times over.  Not all colleges offer it, but if a choice between two colleges is close and one offers the program and the other does not, give careful consideration to the program that offers tuition insurance.  

It is my hope that this article provides information on resources that I was initially (and I think most people are) unaware of.    Obtaining insurance through Medicaid and Medicare removes the pressure of having to finish college or a training program and finding a job with insurance by age 26.  It also allows employment in fields that don’t provide insurance, such as independent contractor or entrepreneurial opportunities.  

If readers know of additional insurance related information that would be beneficial to our group, please share on the APS Type 1 Facebook page or contact me here.

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