Posts in Caregivers
From Parent, to Advocate, to Leader (by Jessica Fox)
Jessica Fox and her daughter Claire, age 4

Jessica Fox and her daughter Claire, age 4

I am a mom.

When my daughter was born with a heart condition requiring a high level of medical care, I became her advocate.

When I realized there were many kids like her, unable to access the resources they need to survive and thrive, I became a leader.

The truth is, I never thought I would be a health care expert meeting with legislators in our state Capitol, but now I am. Because I have to be.

Too often, our policies on health care are made by people who do not understand what it's like to care for a child who has had more doctor's appointments than play dates. That is why I started speaking up and fighting to change our state law.

I started speaking up because of my daughter, Claire, a very happy four-year-old child. She loves to tease her siblings and will pull out all the stops to make them laugh. She loves music and she loves to play dress up. She currently attends an inclusive pre-K program, where she signs her best friend’s name “poppy” by using sign language for “bubble".

In many ways, she’s just a kid living her best life; but unlike most kids, she has spent more than her fair share of time in hospitals, racking up millions of dollars of medical bills in the first two weeks of her life.

We were very fortunate to be covered by my employer’s commercial insurance plan to pay for her medical care. In addition, due to Claire’s extended hospitalization, we also qualified for our state’s Medicaid plan, called TennCare, as a secondary policy. This was necessary because as great as our insurance was, it did not cover everything Claire needed, like her therapies, medical equipment, and surgeries.

Then, one day, just prior to Claire’s 4th birthday, we lost her Medicaid because we no longer qualified. Just like that. I appealed not once, but twice and lost. How could a disabled child be denied access life-saving medical care in America?

I sat in the grocery store parking lot crying one day, and I knew I had to do something.

I have to confess that a year ago, I had no idea who my State Representative was. We all start somewhere. I began a letter writing campaign and asked everyone I knew to join me.

I connected with groups like Little Lobbyists, a family-led organization advocating for children with complex medical needs and disabilities, where I felt encouraged and a sense of community. I made calls to my State Senator. I reached out to several agencies. I attended health care forums. I took notes as candidates campaigned for the mid-term elections.  After tucking my kids in bed, I spent my late nights reading and learning about our state government. I learned about the Katie Beckett program, a Medicaid waiver program that allows medically complex children to live at home with their parents instead of an institution, by waiving the parent’s income. I learned that Tennessee was the only state in the country without this program.

I told my story in several newspaper and television interviews. This past October, my daughter’s face was the front-page center piece article of our local newspaper, talking about why we need the Katie Beckett program.  I joined four other families with children like mine, and we took off to our state Capitol. That day, my husband and I took our daughters to meet various lawmakers who agreed to sponsor a bill that we hope to become a Katie Beckett program in Tennessee.

I remember we sat in a legislator’s office, next to Claire as she rocked in his rocking chair. When you show up with your kid at the state Capitol, legislators are forced to see them with their own eyes. Claire is not a number or statistic; she’s a real child.

Jessica Fox with her family visiting Tennessee State Representative Sam Whitson

Jessica Fox with her family visiting Tennessee State Representative Sam Whitson

Our bill is now progressing in Tennessee’s House of Representatives. This bill, if passed, will ensure Claire can access the medical care she and so many other kids need and for us, that means we give them every fighting chance to reach her their highest potential.

This is why we need to engage our lawmakers. They work for us. They need to understand how policies affect our lives. We are the experts on our children. We are the experts on policies that affect our children.

We are constituents. We are real people, who care about our loved ones. We are spouses and siblings and friends and neighbors, and yes, we are parents. It is time for us to speak up and lead.

Some of the Tennessee families fighting for a Katie Beckett Medicaid waiver in their state.

Some of the Tennessee families fighting for a Katie Beckett Medicaid waiver in their state.

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Confronting my own ableism as the parent of a child with complex medical needs (by Tasha Nelson)

The realization hit hard, like a punch to the gut. Almost as hard as the day I learned my son has Cystic Fibrosis, an incurable fatal illness. I’m nearly 39 years old, have always considered myself an ally to marginalized communities, and have loved all people of all varieties all my life. I’m aware of racism, sexism, and ableism - discrimination against people with disabilities. But what I wasn’t aware of, until today, is that I myself have been an ableist.

Why am I calling myself an ableist? After all, I’m part of Little Lobbyists, a group of caregivers who advocate for kids with complex medical needs and disabilities, to ensure lawmakers understand our needs. Yes, I just said “our needs” and you’re probably wondering how I could be ableist? Good catch.

Recently, Little Lobbyists leadership were discussing how we define who Little Lobbyists advocates for. Within this definition, there was one sentence I was completely offended by. It read: “Kids with complex medical needs have disabilities.”

The degree of offense I felt was one of the greatest I’ve experienced. This one sentence and my reaction to it rocked my world. (I want to acknowledge here that I have benefitted from a very middle-class, white-privileged life. I realize, those reading this who have endured far more discrimination than I ever have, might be spitting out their coffee and laughing at my ignorance as they read this, and rightly so. I fully understand my experience is not remotely close to what so many others face every single day. For my part I continue to strive to do better.)

During the conversation that followed about this sentence I indicated that, though my son is medically complex, I in no way identified him as disabled. I could tell the other moms, who do identify their children as having disabilities, were surprised by this. We’re all Facebook friends, so they have a view into my son’s medical needs. I suspect much of what they see is similar to their own experience, and so they assumed we also identified as part of the disability community. We had a positive and open exchange about why I didn’t think my son was disabled, they listened to my opinion and didn’t push me to identify differently.

But since that day, I have found myself frequently revisiting that conversation and asking myself why don’t I identify my son as disabled? Is it because he has no cognitive disability? No visible physical disability? Because he doesn’t qualify for disability services under SSI? Could it be related to the first, and often repeated, thing the CF care team said to me when he was diagnosed – “your baby is a normal baby, who happens to have Cystic Fibrosis?” Is it because of the heavy stigma society puts on the word “disability?” Honestly, I think all of these things have played a role.

The ADA defines disability in this way: “ a person who has a physical or mental impairment that substantially limits one or more major life activity.”

My son Jack takes over 50 pills and 14 different medications per day. His respiratory therapy takes 2 or more hours every day. He spends a large portion of his life in the hospital. He’s not in school this week because he is not absorbing food, isn’t breathing as well as usual, and we have to implement new therapy techniques and train his school nurse to perform them.

Cystic Fibrosis (CF) is invisible, progressive, and deadly. Until his lung function drops below 80%, I consider him healthy in comparison to other people with CF. However I know full well that every single day, every organ in his body sustains more damage. His medications help slow the disease but cannot stop it. A simple cold could end his life.

Clearly Jack has a physical impairment that substantially limits one or more major life activities. My son is disabled. It is the first time in his nearly 8 years of life that I have said those words, accepted them, and fully understood what they mean. My son is disabled. Tears are dropping on my keyboard as I type this, tears from shame – not for my son, but for myself. For the first time I realize that I am an advocate for the medically complex and disabled community who could not see her own ableism.

Fortunately, Jack did not inherit my ableism. I suspect he self-identifies as a disabled person without realizing it. He is drawn to other children with disabilities and befriends them immediately. He says “mamma that kid is like me, we are gonna be best friends!”

My job now is to be like Jack and embrace this part of him. I need to acknowledge my shame, and work to change the stigma against disability that was so deeply ingrained in me that I could identify my son as medically complex but feel offended by the word “disabled.” It is up to me to shed the ableism society has instilled in me from youth. Doing so will make me a better person, parent, and advocate.

Being a member of Little Lobbyists has opened me to a world beyond Cystic Fibrosis. It has helped me focus on all forms of medical complexity and disability. Our advocacy isn’t about a specific disease, syndrome, or disability, because we really are stronger together. It’s about raising ALL of us up to create a voice loud enough to get Congress to pay attention to our children with complex medical needs and disabilities and consider them every single time they write a new policy or review a proposed law that impacts them.

Thank God for my friends in Little Lobbyists who did not judge me as I walked this path of discovery, but gently educated me while embracing me and encouraging my advocacy. I have a feeling I’m not alone, and am writing this in part as an invitation to other parents who may, like me, be in denial about their child’s disability. It’s time to take a good look at why we fear this word. Ending society’s stigma against our children with disabilities must start in our own hearts.

Little Lobbyist Jack in front of the U.S. Capitol.

Little Lobbyist Jack in front of the U.S. Capitol.



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.