clock menu more-arrow no yes

It’s hard to keep a job with 2 autistic sons. A Medicaid work requirement would be disastrous.

The challenges for caregivers like me in staying employed.

Protesters hold up Save Medicaid signs in Washington, DC, in September 2017.
Bill Clark/CQ Roll Call

In April 2014, one of my sons fell from a height of eight or nine feet. He landed feet first, with his left foot and ankle hitting the ground first, resulting in multiple fractures. What followed were three surgeries, weeks in a hip cast and in a wheelchair, months of physical therapy and counseling to work through the panic attacks.

My son is autistic — sensory processing issues go hand in hand with autism. While visiting a state monument, he stepped off the edge and fell. An injury like this is difficult for any kid, but amplified for an autistic one. The feeling of confinement from the cast and restricted movement caused my son to have repeated panic attacks. He worried constantly that something bad would happen, his fears often keeping him awake. Once he couldn’t sleep for 48 straight hours, and I stayed awake with him the whole time.

When he fell, I was employed. Less than 10 days later, I was not. At the time, I was doing bookkeeping work for a home therapy company and was forced to miss more than a week of work following the accident and my son’s first surgery. When he returned to school, I tried to return to work. But the panic attacks continued, and I often had to leave. I was unable to keep up, and my supervisor became increasingly frustrated. I wound up in a “quit or be fired” scenario. As a single parent, I was already struggling with the demands of work and the needs of my kids. The accident ended the juggling act.

Without a job, health insurance is not affordable for me, and so I’m now covered by Medicaid. When I heard last week that the Trump administration approved plans to force work requirements on Medicaid recipients, I was terrified.

I have an 11-year-old boy as well, who is as brilliant, creative, and determined as his brother — and he’s autistic too. What that means is my days, and theirs, are completely unpredictable.

Both are easily frustrated and overwhelmed at school. Most typically developing kids make use of readily understandable verbal and nonverbal language when it comes to social cues; my kids don’t. Norms about personal space or expected behavior in class, school hallways, or the cafeteria don’t make sense to them.

My boys are aware they are different. When there’s a disconnect in navigating the social communication that most of us take for granted, they melt down. When they melt down, they act out and often hurt themselves. They bang their heads on walls, desks, tables. One hits himself; the other pulls his hair out of his scalp and scratches himself until he bleeds. One has tried to throw himself down the stairs at school more than once.

The best efforts of committed teachers, counselors, and school administrators are not always enough to reach my kids. When kids are hurting themselves, schools have to pull in a parent. I’m divorced, so that parent is me. Sometimes I can talk my kids through a crisis over the phone. Other times, I need to go to school to work through the meltdown. Other days, they are so raw they can’t finish a school day and are sent home.

Last week, the Department of Health and Human Services’ Centers for Medicare and Medicaid Services sent a policy letter to state Medicaid directors titled “Opportunities to Promote Work and Community Engagement Among Medicaid Beneficiaries.” The letter details a plan to support state efforts to attach a work or “community engagement” requirement to Medicaid benefits. While my home state of Texas has not yet applied, I’m scared it eventually will, given the state’s conservative bent.

I don’t know what I would do.

The challenges of keeping full-time employment while caring for two autistic boys

The subtext of the Trump administration’s latest move is this: All these slackers on Medicaid kicking back all day doing nothing should really be working.

There is a false narrative that people on Medicaid or SNAP (food stamps) are collecting these benefits out of choice rather than necessity. I am on Medicaid because being a caregiver to my kids makes employment a huge challenge. I can easily get a job. I cannot keep a job.

In addition to the challenges of getting through a school week, there are appointments with therapists and psychiatrists. There are IEP (individualized education plan) meetings with teachers, case managers, school psychologists, and administrators. There are phone calls from teachers, staffings and conferences. All this eats away at my employability.

Businesses value workers who are predictable in scheduling requirements. Even jobs I’ve taken under an explicit understanding of my situation have been tough to keep. It would only take a few weeks of teacher phone calls and leaving work to handle a meltdown before the disapproving looks and casual critical comments started. As much as a manager may understand my unique needs, many businesses find it hard to function without reliable employees. My situation renders me unreliable, through no fault of my own, and so I become essentially unemployable.

Medicaid is essential for covering my family’s needs

I depend on Medicaid to cover medical costs for my boys, who are covered primarily by my ex-husband’s policy and secondarily by Medicaid. Without Medicaid, I could not afford their doctor visits and prescription copays. One of my sons takes six prescription medications daily, some related to autism, some for asthma; the other takes two prescriptions daily for autism-related conditions. Medicaid covers all medical, dental, and prescription copays for them.

There’s also my own health — Medicaid covers medication and monitoring for several chronic conditions, including high cholesterol and anxiety. I take four prescription medications daily. Losing Medicaid would mean having to shift some of my financial resources to pay for these drugs, meaning money taken away from the needs of my sons. Without these drugs, I would be at heightened risk of stroke or heart attack, and if I had a heart attack I’d be unable to care for my children. For me, access to health care is essential to the survival of my family. Medicaid is a necessity, not a luxury.

I live in a state already hostile to Medicaid recipients

It’s important to note that there is a caregiver exception in the work requirements letter. Quite simply, I don’t trust it. State Medicaid directors have been charged with implementing this new policy, and I live in Texas, a conservative state.

When the Affordable Care Act passed, Texas declined the opportunity to establish a state exchange and refused federal money for Medicaid expansion. My oldest son has been on the interest list for waiver programs — programs that cover services like respite care (extra caregiving that would occasionally free me from being on call 24 hours a day) — since he was 3 years old. He’ll be 14 in a few months.

The last Texas state legislative session was spent on both successful and unsuccessful attempts to further restrict access to abortion, pass a bill restricting transgender bathroom use, and instill fear in Texas’s immigrant community with the passage of SB4 — an anti-sanctuary city bill. Texas has no track record of prioritizing Medicaid recipients. So, no, I don’t trust the state of Texas to have my boys’ or my best interests in mind should they implement a work requirement for Medicaid requirements.

Families like mine are not unusual. Chances are you know and love someone who’s in similar circumstances. See us. Listen to us. Our lives will be affected in scary and permanent ways if we lose our access to Medicaid.

Trish Florence is a mom, a community organizer with TX21 Indivisible, an unapologetic feminist, and an activist for racial, social, reproductive, and economic justice. You can find her at the middle school her boys attend or in the offices of her congressional representatives, Rep. Lamar Smith, Sen. Ted Cruz, and Sen. John Cornyn, fighting for the future of her children. Find her on Twitter @SATX_Trish.


First Person is Vox’s home for compelling, provocative narrative essays. Do you have a story to share? Read our submission guidelines, and pitch us at firstperson@vox.com.