Posts in Caregivers
January (by Tasha Nelson)

Medical parents will know exactly where I’m going the second I say the following, “January is coming.” January is easily the hardest month for any medically complex family. In this month it does not matter if we have employer sponsored insurance, private insurance, Medicare or Medicaid—we all are all rendered equal in our work-load.

Why is January so hard for us? There is an annual avalanche of work created for us and our medical providers office by our insurers.

In my family of five there are two of us that are medically complex. I have a rare auto-immune disease called Behcet's as well as a rare blood clotting disorder. My 7-year-old son Jack has Cystic Fibrosis; a progressive and fatal disease that affects most of his major organs. To meet us, you would never know we fight illness. We both look and seem healthy.  By contrast, when you see our medical claims, you would think we were on death's door.

Every January I spend between ten and eighteen hours making calls to insurance companies, providers, pharmacies, and facilities. This work happens whether we have an insurance change or not. Where do we start? We first check our plan benefits and formulary (list of covered medications) to see if there have been any changes.  If our plan has changed pharmacy contracts, we must call and set ourselves up with our new local, mail order, and specialty pharmacy, then if there are formulary changes and insurance is dictating an alternate similar medication, I call the doctor's office to request a new prescription as well as all the other prescriptions be sent to the new pharmacies. While we are on the phone for that we are requesting new prior authorizations for all our expensive medications.

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Most of our medications require a prior authorization so that insurance will cover them. Prior authorizations can take anywhere from 24 hours to ten days to complete depending on whether appeals are needed or not. If appeals are needed, then my work increases and I spend hours proving that my child’s medications are medically necessary. The irony of that is the person making the determination is rarely clinically licensed.

Next, we move to calling each of our medical  provider’s offices. Between my son and I, that is 11 different facilities I contact. Many families with medical complexities rely on grants and co-pay assistance programs which must be re-applied for annually and often provide new identifiers and cards. As soon as we are approved for those items, we make all the calls again.

Many of us incur a little extra work if we elected different insurance during Annual Enrollment, as I did this year. I filled our medications on 12/28/18 with my previous insurance and will fill them again with the new insurance on the first day it is effective 1/7/19. This is because we always need to have a 60-day supply on-hand in the event that we go through a lengthy appeals process, there is a natural disaster, or shipping is impacted. At all times, I must think ahead with every decision we make because without his medication, my son will die. I cannot hope to have enough.  It must be here, ready and on-hand.

This year my family’s insurance has changed, which means I’ll spend closer to 18 hours getting everything updated, ordered, approved, and shipped. The other thing I must be weary of is the dreaded gap. My old plan ends on 12/31/18, the new one begins 1/6/19. This creates a five-day gap where if a claim is submitted for medical care or medications I pay toward my deductible and out-of-pocket on the old plan which will not be attributed to the new plan. If we need medical care in those five days, we are increasing our annual out of pocket over the maximum.

January is full of research, phone calls, planning and care coordination. It is a complex mosaic that sets us up for relative success for the remainder of the plan year. On the other side, our medical providers are working just as hard to update our information and provide the items we need. If you happen to be a person that does not have the same January stress as the medically complex you may instead be a person that notices your doctor’s office running a little differently. The phone queue may be longer, you may have a longer wait for your appointment or a return call. Every piece of work we, as patients, are met with, the doctor's office meets in-kind.


Of Mickey Mouse and Congressmen (by Sandra Joy Stein)
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“Hello, my name is Sandra,” I recorded onto the senator’s voicemail as my own voice cracked. “I am calling you from my son’s Make-a-Wish trip at Disney World.” The tears started down my face. “I beg you to not repeal the Affordable Care Act.”

This was January 2017, just a week week before the inauguration of the 45th President of the United States. The timing felt ominous. We had watched the 2012 election returns from our son’s hospital bed, back when his tracheostomy tube had just been removed and a pacemaker was still protecting his heart. We knew that if our son were fortunate enough to leave the hospital alive, the outcome of the election would determine the fate of his potential for health insurance with a pre-existing condition and without lifetime limits.

Our son’s disease—a horrific and unpredictable autoimmune encephalitis that, like many other diseases, can strike anyone at any age and at any time—came on fast and furious. He went from perfectly healthy to critically ill within a week’s time. His first hospitalization was fifteen months long. The disease caused multiple acquired disabilities, the need for near round-the-clock nursing care, several medications, a wheelchair and other durable medical equipment. While his prognosis was uncertain, his spirit and grit were strong. The mere fact of our trip to Disney World felt like a miracle.

Make-a-Wish was incredibly responsive to his unique needs. Just weeks before our trip, my son stunned us when he regained his ability to walk with a gait trainer. I mentioned this exciting new development to the Make-a Wish staff member who coordinated our trip and she quickly rented a gait trainer for him to use at Disney. When she informed me that “It will be in your villa when you arrive,” I nearly dropped the phone. My son, the bulk of whose childhood has been spent in hospitals and at medical appointments, would be walking around the Magic Kingdom and, just like magic, the durable medical equipment needed to make that possible would appear!

It’s usually much harder. Even with relatively decent insurance, tenacious parents, and extraordinary medical providers, getting my son what he needs is a constant battle and soon after that Disney trip, the administration’s repeated attempts to repeal the Affordable Care Act and severely cut Medicaid made me fear for my son’s life. Should he need to change insurance for any of the predictable reasons, the likelihood that his coverage could be legally denied or prohibitively expensive has increased with each profit-motivated tactic to derail his protection. Given the necessity for mandatory enrollment of healthy folk to compensate for the coverage of folk like my son, coupled with the role of a robust Medicaid program to cover what private insurance does not for people with disabilities, the Republicans have been intent on discontinuing his current level of coverage and care. My son's ability to live at home, frankly to live at all, depends on the social contract between all of us.

Now the 2018 midterms are upon us and I fear for what lies ahead in health policies if the senators and congresspeople who voted against protecting my son’s healthcare remain in office. Already the administration has shortened the ACA enrollment period, allowed junk insurance policies to compete with more robust coverage, allowed non-protection of pre-existing conditions, launched a lawsuit to further undermine healthcare protections, failed to enforce current policies on which people with complex illness and disabilities rely, and misrepresented their healthcare policies and platforms while campaigning. Parents of children with medicalized lives know how to read the fine print of such policies and we know what puts our children’s lives at risk.

My mind returns to that moment at Disney, when I was taking time from my son’s Make-a-Wish trip to call the elected officials I had hoped would break with their party and protect my son. Now it is time to vote them out.


Today’s election matters for family caregivers of children with medical complexity in unprecedented ways. At Little Lobbyists we have leveraged our collective power to protect our children in both our political processes as we also perform their day-to-day care. As November is National Family Caregiver Month, Little Lobbyists is partnering with the Who Lives Like This podcast to feature caregivers, just as we have featured our beautiful children over the past 100 days.

To kickoff off National Family Caregiver Month, Who Lives Like This features writer and caregiving comedienne Sandra Joy Stein. You can hear her episode on Who Lives Like This at http://bit.ly/NaFaCaMoPodcast.