Post Author
Lisa Divers
NC Child Storytelling Fellow
My Thoughts on Medicaid as a Source of Hope Instead of Punishment
Recently, I came across an article that included the findings from a study in The Journal of Autism and Developmental Disorders that stated that the levels of chronic stress experienced by mothers with a child with autism were similar to those of combat soldiers. The findings in this study did not surprise me at all because I recognize the high level of stress that I felt every day. Reading the results of the study confirmed the anxiety and worry that I silently carry around daily, but didn’t know how to verbalize and explain.
So why is the stress level so high? What are the daily stressors that mothers who are caring for their special needs children dealing with?
The easiest way for me to explain this is to think about what typical parents worry and stress about, and then increase it by 10. I know that seems like I am being dramatic, but I’m not. I know this to be true because I previously raised a child without special needs and this time around has been 10 times more stressful. In addition to general parental concerns, we also have constant anxiety about what will happen if something should happen to us unexpectedly and we are no longer able to care for our child due to severe illness or death. We worry about being able to find therapies and, if found, how we will pay for it. We are stressed when we are in public doing everyday things, like running errands, due to unexpected behaviors and the reactions from others.
What I have found true throughout the years is that although special needs families share similar levels of stress, our worries are unique to our specific journeys. For example, I have an amazing friend who is also an “autism mom” and although our worries and concerns are mostly similar as special needs parents, the stress I experience as a single mother are very different from hers, as she is married.
My son and her daughter have been in the same classroom since kindergarten. Both children are nonverbal and their autism indicators are very similar, and obviously their genders differ, so in that way we have different worries and concerns. In addition, my friend has not been able to access the therapies that my son has been able to because she does not qualify for Medicaid due to income limitations, and her family’s health insurance does not cover the therapies that her child needs. My son has been able to receive these beneficial therapies because he qualifies for Medicaid because I am divorced and now a single mom and I decided to quit my job so that we would qualify. Which one of us is winning though? Neither one of us are, in my opinion. We both made tough decisions that we thought were in the best interest of our families.
Let me share a bit of my journey. This journey began for us when my son was 18 months old at an appointment with his pediatrician because I started noticing that he was losing words quickly. I was sitting in the pediatrician’s office and heard these words: “It has been determined that your child has been diagnosed with autism.”
Gut Punch #1
My world immediately came to a halt, and just like that, all the plans and all the dreams that I had for my child seemed instantly out of reach. What did this mean for him? For us? All those months ago, when I first noticed him losing his words, noticed that he was beginning to walk on his toes and flap his hands–I didn’t believe those indicators would lead to me hearing these words.
I was jolted out of these thoughts because the next thing I heard was the staff at the office explaining that I needed to start making appointments as soon as possible for all the tests, treatments, and therapies he would need.
For just a moment, I let myself think about the dreams I had for my son and I wanted to cry because I wouldn’t be able to make that happen for him. I didn’t know if this was my fault genetically or something I could have done during the pregnancy to prevent this; there were no answers. I was instantly transported to an island of one, an island I would frequent all too often on this journey. I felt sad, angry, confused, helpless all at once, but there was no time to think about that; I needed to get these appointments scheduled because there was a waitlist everywhere and I couldn’t drop the ball. My child was depending on me.
Then: Yes! I was able to score an appointment! Hope! I took my son to his first of what I didn’t realize at the time would be many appointments that would consume my life. I made it to the appointment and the front desk employee informed me that my insurance did not cover this particular therapy. I ended up paying out of pocket and figured that I could pay out of pocket for this until I could switch to another health plan at work that would cover his therapy. I scheduled a time to talk to my HR person to figure out what plan I needed to enroll in during open season to make sure my child would be covered and I was told that there was no plan that covered this type of therapy.
Gut Punch #2
I had just got my world slightly spinning again after that first gut punch. I was just starting to feel hopeful getting him into the therapy and now I may not be able to keep him there because I couldn’t afford to pay for it long-term on the salary I made. I was already blowing through my savings while paying out of pocket–and my credit cards surely would be maxed out after a couple more appointments.
I began thinking about the dreams again that were definitely looking like a nightmare now. I needed to find a solution. A friend suggested that I apply for Social Security disability so he could qualify for Medicaid, which I did, and he was quickly denied initially because my salary was too high.
Now I had a decision to make, and make quickly. Time was of the essence. Do I quit my job and ensure that my son is able to get the services he needs, or keep my job and skip the therapy and hope he gets better over time?
I couldn’t gamble with my child’s life. Of course I chose him.
I resigned from my job of 16 years at the Association of American Medical Colleges. This was a job that I enjoyed very much, with full benefits, a nice retirement package and a comfortable salary. This is the choice that has positioned us on our Medicaid journey.
The past nine years have been a blessing, but also stressful. It’s been a juggling act of finding work that will allow me to work around my son’s school and therapy schedules and to be present for him and his younger sister, who has this year also been diagnosed with autism, but on the complete opposite end of the spectrum. I struggle to maintain a salary that will allow me to financially care for my family, allow me to find joy, purpose, and dignity in my work, but also not be too successful for fear of my child being kicked off Medicaid. I am in a constant cycle of worry, uncertainty, walking on eggshells, and tremendous anxiety surrounding finances.
Our Medicaid journey has been a blessing for our family in many ways. Knowing that my child has been able to receive consistent therapy for speech, occupational, physical, and ABA has been helpful and we are so grateful. On our journey, we have also met and formed amazing relationships with other special needs families along the way. I am so grateful that my son has been able to access the care that he needs, but it has been at a huge cost to our family. What I imagined as a temporary situation and solution has become our way of life and I don’t see a pathway out or feel confident about what comes next.
This particular concern or stressor seems to be at the forefront from special needs families of all backgrounds. A USC-led study has found that many households cannot afford a caregiver or therapy services and require a parent or guardian to take unpaid time away from work, which comes at a great cost, both financially and mentally to these families. The author states that U.S. families provide nearly $36 billion annually in uncompensated medical care at home to children who have special health care needs and collectively, families lose more than $17 billion in income each year. Parents want to do everything they can for their children, but it can be a real challenge to juggle caregiving to their child, caring for siblings while also maintaining a job.
I believe Medicaid should be a source of hope for families to assist them in creating new dreams and aid them by offering alternative pathways for all families. For families who qualify for Medicaid, this support should not be a journey that leads to nowhere and feelings of being stuck. Medicaid can and should be a system that works with families at various financial levels as part of the team; a tool and benefit that promotes dignity, sets realistic limits on income, and provides a pathway for families to maintain a modest and stress-free lifestyle while still making sure parents are confident that their child is able to access the care they deserve.
Lisa Divers is a member of the 2023 cohort of NC Child Storytelling Fellows. The fellowship supports individuals with direct, lived experiences as they share their stories with organizations, community members, and thought leaders about how health policies like Medicaid play a role in their lives.