Special needs parenting—like all parenting—is a job that’s rife with emotion. Most often, though, I find much of my heart is divided between hope and despair. 

Hope overwhelmed me when I first met my squirmy newborn, full of vim and vigor, the whole world in his tiny hands. But the despair that followed his first diagnosis, and each that has followed, has been all consuming. You grieve the future you imagined for your child and question where the world will take him. 

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We received Wayne’s diagnoses in fits and starts over the past six years, an emotional roller coaster our family will always ride. Failure to thrive, a meek newborn who couldn’t quite get the hang of eating. Missed milestones and confusing doctor’s visits over the years. Tests that confirmed a brain abnormality and a less than conclusive label of “atypical white matter brain damage” and suspected cerebral palsy. And with each diagnosis came tears and questions. And paperwork.

What I didn’t realize—until the bills and the claims forms started rolling in—is that the despair over the cost of care and medical red tape can consume even more of your psyche than grief ever could.

At six years old, my little guy is already worth hundreds of thousands of dollars in medical bills—regular overnight EEGs at $14,000 a pop to monitor his seizures and hundreds of dollars a month for medication to control them, more than $5,000 annually in private speech therapy to help him learn to communicate via gestures and technology (he doesn’t yet have words), and dozens of specialists to help manage his many diagnoses … a list that continues to grow and now includes an incredibly rare chromosomal microdeletion and epilepsy and quite possibly autism.

In the world of special needs parenting, though, his medical bills are insignificant. A few hundred thousand dollars is literally a drop in the bucket and we’re lucky to have private health insurance and Medicaid. By the time some children with disabilities are able to wear their one-month onesies they’ve already surpassed the million dollar mark. Open heart surgeries, g-tubes, therapies and durable medical equipment—the bills add up fast.

These bills make up some of the $800 billion that congressional Republicans would like to see stripped from Medicaid over the coming years. What they apparently don’t comprehend are the irreversible consequences that would come from gutting this safety net. Consequences that extend far beyond the balance sheet.

When Wayne was first diagnosed in early 2012, he was a roly poly nine month old and his parents were terrified first timers. We didn’t know where to go to learn about parenting a child with a disability. We found hope and support in the services we were able to access through Virginia’s EDCD (elderly or disabled with consumer direction) Medicaid waiver. Amidst the grief we were managing, educated social workers helped us to understand the services available to our family and how they would help him succeed. They helped us access information about his diagnosis and his potential. 

I can’t imagine my family’s life should the Republican’s plan for Medicaid be realized. Medicaid currently pays for the certified nursing assistants who care for our son while my husband and I work at jobs we can’t afford not to have. It helps to pay for the speech, occupational and physical therapies he receives at school. It offsets the thousands of dollars of medical expenses that private insurance won’t cover—additional therapies, specialty drugs to control hard-to-manage seizures, incontinence supplies and more. It creates opportunities for respite, which is invaluable when you consider the chronic stress of being a caregiver to a person with a complex healthcare need. And it gives us hope that he’ll be able to stay in the community after my husband and I pass away.

Rather than living out the balance of his life in the severity of an institution, Virginia’s Community Living Waiver offers the possibility that Wayne will get the supports he needs as he grows into an adult. He is one of 11,500 on waiting list—a list he’s been on since he was four years old, in hopes he’ll make it to the top by the time he’s in his mid-twenties. Not only does it make good moral sense to keep people in their communities, it makes good fiscal sense—the average costs for care in a state-run institution can be as high as $600,000 annually, when the average costs of community-based services nationally is $43,000. You would think these are numbers that would intrigue even the most conservative fiscal minds, yet somehow, even the math doesn’t seem convincing.

As Senate Republicans drag out this healthcare debate, each proposal they envision crueler than the one before it, they’re forcing families like mine onto a new emotional roller coaster of uncertainty. I implore them to consider the humanity of their actions and to take a step back and understand everything that the safety net catches.

Sure, it catches the direct costs of healthcare that many families, especially those living with a disability, simply can’t pay. But it also catches all of our despair, giving us hope that our families are going to make it. Giving us hope that our kids are as valued by society as they are in our homes. And giving us hope for a future where they are happy, loved and able to give back as much as they get, however they can.

Brandi Horton is part of the United Cerebral Palsy's grassroots family network. She lives in Arlington, Va. She is a working mom of two rambunctious little boys. One just happens to have a disability.


The views expressed by this author are their own and are not the views of The Hill.