Sandy Bush estimates she spends roughly 50 hours a week caring for her son, Cam Bush, not including the time she spends checking on him while he’s sleeping or being “on call” while he’s at school.
Those hours include more than traditional parenting tasks, as Sandy is the primary caregiver for 12-year-old Cam, who has a rare genetic disorder call SCN8A.
Caregiving is not the same as parenting, she told Knox News, and the Freedom for Family Caregiving Actmaking its way through the Tennessee General Assembly committee process could offer a way for Sandy and others in a similar situation to be financially compensated for hours they are unable to spend at a full-time job while caring for their children.
Sandy has doing it since quitting her job as a registered nurse in 2012, telling Knox News that caring for Cam is like “apples to oranges” compared to what she experiences with her other child.
“It’s completely different because there are no times off,” she said, “There’s no break.”
Meet Cam, a happy Swiftie with a jokey streak
Cam loves being outside. He also loves water, whether that’s a bath, splashing in buckets of water or hanging out in his hot tub, which he received through the Make-A-Wish Foundation. Cam also is a fan of “Taylor Swift: The Eras Tour” on Disney+, Sandy said. His dad, Brian Bush, describes Cam as a “big ‘Reputation’ guy.”
Cam can be a jokester who’s “kind of silly,” Sandy said, but he’s also nonverbal. With SCN8A, Cam has epilepsy, an intellectual disability, an autism diagnosis, ADHD and sensory processing disorder.
Lately, it’s typical for him to have a couple of seizures a day.
While there are challenges that come with these diagnoses, Cam generally stays in good spirits.
“He doesn’t know about anything bad,” Sandy said. “Like, he doesn’t know bad stuff happens. He doesn’t know to be stressed. So, he’s just happy. And that’s what we want for him.”
What it’s like to be Cam’s caregiver
The Freedom for Family Caregiving Act, also known as the Freedom for Family Care Act, would allow Sandy to be compensated for a portion of the hard work that goes into ensuring Cam’s wellbeing. And when caring for Cam, a lot can happen.
“He really learns from repetition, constant repetition,” Sandy said. “He knows how to come out here to his water, he knows where his room is, his toys. But he doesn’t know what it means to get burned by something that’s hot, you know. To get hit by a car. To get lost.”
In addition to these external concerns, Sandy also navigates internal safety concerns that come with Cam’s SCN8A and that require her constant attention.
“He’s not a baby, so I don’t like comparing him to a baby, but most people can relate to what it’s like to have an infant, and it’s very similar,” she said. “It’s that feeling of like, you haven’t accomplished anything, but you’ve been so busy all day.”
“I brush his teeth, I do his meds, I feed him, I dress him, I change his diapers. So, it’s kind of that total care like you give to a child before they’re a toddler and can start doing some stuff on their own. It’s that all the time.”
Cam is enrolled in Tennessee’s Medicaid program, TennCare, through the Katie Beckett Waiver program that helps pay for services for disabled children. Through the Katie Beckett program, Cam is allotted 45 direct care hours, which are used in his case to pay for a private-duty nurse who attends school with Cam at Hardin Valley Middle School.
“With somebody like Cam, if I was for some reason unable to take care of him, like eventually this government is going to pay for it in some form because he would have to go to an institution,” Sandy said. “If the caregivers don’t do it, it does eventually fall on society in some way.”
A caregiving shortage in the U.S. and abroad is making it increasingly difficult to find caregiving personnel. It’s estimated there will be a national shortage of 151,000 paid caregivers in 2030, with the work falling to 3.8 million unpaid family caregivers, according to “Who Will Care for Us: Long-term Care and the Long-Term Workforce,” a book by MIT professor emeritus Paul Osterman.
If passed, the Freedom for Family Caregiving Act would supplement the national caregiving shortage by allowing Sandy to be hired for all or some of Cam’s 45 direct care hours and to be paid out of the same pool of funds.
How money would be allocated in Freedom for Family Caregiving Act
Typically, a person with a disability covered by TennCare takes part in what’s referred to as a person-centered planning process, an annual meeting with the person who has a disability, their circle of support, sometimes doctors or therapists, and TennCare, according to Jeff Strand, director of public policy for the Tennessee Disability Coalition, advocates of the bill.
“They sort of almost negotiate how much of a given service somebody needs,” said Strand, and that’s how Cam’s 45 direct care hours were determined.
Based on each person-centered support plan, TennCare sets aside a corresponding amount of money. The Freedom for Family Caregiving Act only changes the recipient of the funds, not the amount allotted.
Once the hours are determined, TennCare provides a list of covered providers, and the family caregiver contacts them to set up care. “The only thing that changes with this law is that you reach out to the provider agency and say, ‘Hey, can you hire me and assign me to be the (caregiver) to my family?'” said Strand.
“Essentially we’re saying that if you can hire a direct support professional from a provider agency who’s not related to provide, say, 40 hours of personal assistance, a parent or family member would have equal access to that position.”
If passed, the bill would require TennCare to create and share a document with provider agencies that outlines permission to hire family caregiveres and how to do so.
As of March 19, the bill had passed unanimously out of the Tennessee State Senate Health and Welfare Committee and is going to the Senate Calendar Committee. Its companion bill had unanimous support in the Tennessee House Insurance Committee and is heading next to the House Government Operations Committee.
‘It doesn’t feel very valued’
It’s not just the daily care tasks that Sandy oversees, but doctor’s appointments, too. Between appointments and therapy, it’s rare Cam will have a week without needing to see some kind of medical provider, Sandy said.
Because Cam sees so many medical professionals, Sandy also functions as a health care coordinator of sorts, ensuring communication between specialists is maintained and keeping tabs on what information each knows or needs to be made aware of.
With SCN8A being a fairly rare disorder, there’s an extra level. Sandy has to be Cam’s advocate when it comes to situations in which doctors might not be familiar with a particular medication or even the ins and outs of the disorder itself.
“It really is like a whole full-time job on its own, coordinating his care, and then I also take care of him physically, and then I’m also his mom,” Sandy said. “So, it really is a lot. I’m way more busy than when I worked as a nurse full time. Like, it’s not even really comparable.”
The Bush family had their biggest medical scare about three years ago when Cam was hospitalized for status epilepticus, repeated seizures without recovery in-between. He was in the Pediatric Intensive Care Unit on a ventilator for around 10 days.
“He’ll live with us forever. He’ll need 24/7 care, always, to keep him safe. That’s some of the stuff that makes it a lot different than the typical parent-child relationship,” Sandy said. “There’s not really any babysitter situation because they need medical training.”
Luckily, Brian’s income is enough for the family to live on. But even then, Sandy would prefer to work full time if she could. “
We’re surviving here, but obviously with the way the economy is and the prices of everything, if I was able to work (full time), I would be working to contribute,” she said. “But I need to be available all the time for him.”
In some cases, paying family caregivers could provide income that’s not available otherwise. Director of public policy Strand gave the example of two older adults, one who might qualify for Medicaid and the other serving as their spouse’s caregiver. If neither can work any other job, payment for that caregiving could be their only option to generate an income.
For Sandy, the Freedom for Family Caregiving Act is all about feeling valued for what she does: the expertise, the vigilance, the coordination.
“(It’s) more hours than a full-time job, more important,” Sandy said. “You’re literally keeping someone alive. We joke about it all the time, but like for real … he would die if we weren’t paying attention just in any given day. You are doing something huge, and it doesn’t feel very valued.”
Hayden Dunbar is the storyteller reporter. Email hayden.dunbar@knoxnews.com.
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Sandy and Brian Bush’s youngest son Cameron, was born with a rare genetic disorder that manifests in epilepsy, intellectual disability, an autism diagnosis, ADHD and sensory processing disorder. The family hopes the Freedom for Family Care Act of 2025, which would create a way for family caregivers to be paid for providing care to loved ones with disabilities, passes into Tennessee law.
Cameron Bush plays with buckets of water on the patio of his West Knoxville home.
This article originally appeared on Knoxville News Sentinel: Freedom for Family Caregiving Act would help family caregivers get paid
