Family caregivers are unseen workers in Pittsburgh and across the country

When Joy McDaniel was 6 years old, she knew that one day, she'd be taking care of her older brother. Alex — McDaniel calls him "Buzzy" — is 13 years her senior and has cerebral palsy. He lived with their mother in her Mount Washington home until their mother passed away in 2018.

By then, taking care of family was second nature to McDaniel. Her children, Angel and JJ — 32 and 30, respectively — were both born with autism. Angel is able to live independently, but JJ has profound autism; he exhibits self-injurious behavior and is nonverbal — he doesn't communicate with spoken language — McDaniel says.

"When the house next door became available, we moved in, because I just knew it was going to be easier," McDaniel says. "Then in 2018 when Mum did pass away, I moved my Angel in here with my brother.'"

There are approximately 9 million other caregivers like McDaniel in the U.S., according to Caregiver Action Network — for reference, the Bureau of Health Workforce estimates that there were 4.3 million registered nurses in the country in 2022. Since 2008, advocates nationwide have celebrated National Family Caregiver month in November to raise awareness about the often-unseen work they do.

McDaniel, 50, coordinates her family's joint operations like a business: tracking three separate care schedules and making appointments while also serving as a full-time caregiver for JJ. Simultaneously, like any parent, she manages both households — taking care of purchasing groceries, preparing meals and keeping the homes in order.

All of her family members receive Medicaid waivers — the funds are "waived" from the state facility where an individual would be cared for by professionals and are instead provided to them for services while living at home. Angel and Buzzy receive Medicaid Community Living Waivers, which can pay up to $97,000 per year per person.

"Buzzy's able to have up to like 50 hours a week of services," McDaniel says. "And then Angel is splitting hers. She does a day program. She also works competitive wage at Bitty & Beau's and she also has staff that comes in."

JJ's Consolidated Waiver comes with no dollar cap, and as his caretaker, McDaniel can bill 40 hours of work a week. But for her and caretakers in similar situations — where their child or other loved one needs constant assistance and supervision — those billed hours account for a fraction of the work they do.

"We're the ones that are most villainized because you have caregivers that are paid through [the Office of Developmental Programs]," McDaniel says. "It's like, 'Oh, must be nice to get paid for working for your own kid.' That's the policymakers who say these things, that's the ones who approve services who say these things. 'Why does he need 98 hours a week of services?' Because there are 168 hours in a week. That's why."

McDaniel didn't give specifics on how much she has earned in the past or earns currently, but says her family wasn't financially stable until she became a family caregiver. Until JJ graduated in 2016, he attended the Watson Institute. McDaniel tried to hold down different jobs, but would often have to drop shifts at a moment's notice if the school bus arrived without an aide to escort JJ.

It's hard to be needed every hour of the day, but not having to worry about a nine-to-five job in addition to her family makes life more bearable.

"In the beginning, it was really rough. My sidekick," McDaniel says, looking across her dining room table at Angel, "she's everything." McDaniel would tell her that dinner was ready, and Angel would watch her brother, so McDaniel could set up dinner "and then we would swap again."

"You're not allowed to get burnt out."

Rich Guszczynski has two kids, but he's had as many as seven foster children or adoptees living with him in the past. He studied psychology and has had multiple caregiving jobs across the East Coast. In his 20s, he decided to use his skills to foster and adopt children that often no one else could care for.

Many of them came to him as toddlers — Guszczynski adopted his son Evan when the boy was 3. The now-22-year-old still lives with Guszczynski in his West Allegheny home through the state's Lifesharing program, which enables people with intellectual disabilities to live with qualified caregivers by providing them with Office of Development Program funds.

Guszczynski's two sons are nonverbal. When his second son — 9-year-old Austin — is at school and Evan isn't in a day program, Guszczynski and Evan hit the town to shop or eat. For the pair, Neville Island's Paradise Island Bowl is a popular stop.

The life Guszczynski leads with his kids is a stark contrast to many of the treatment facilities, group homes and programs that existed when he started working as a care professional in the area some 30 years ago.

"I've been a lot of different places and most of them are sad," Guszczynski says. "They're only in it for money — the kids are a product. 'We want to get these beds filled, we want to do this, we want to do that.'"

"And then it gets worse when they're adults, because then there's even less [available programming]."

After graduating from the University of Pittsburgh in the 1980s, Guszczynski wanted a break from Pittsburgh. He took a job at a camp for dependent adolescents in New Hampshire, 10 miles from the Canadian border. His campers were in their early teens, and Guszczynski was 24.

A year later, he was ready to come home. Guszczynski wanted to be close to his family again and wanted a break from constantly caring for 10 campers. His homecoming was around the same time that Allegheny County was laying groundwork for similar care programs, and the New Hampshire camp sent him home with the knowledge of what good caretaking looked like.

He started as a respite caregiver — someone who provides short-term support when a family caregiver needs a break — then became the county's second registered therapeutic support staff, what he calls "TSS."

But the professional growth started manifesting into more office work, which cut into time he spent helping families take care of their children — the work he wanted to be doing. In residential facilities, Guszczynski met kids that he wanted to help out.

"But I'm a 20-something guy at the time," Guszczynski says. "I was living with roommates — that doesn't work."

His journey toward parenthood started with, of all things, a flooded ceiling at his apartment off Bigelow Boulevard in Oakland.

"We had a waterfall down the stairs," Guszczynski says.

It sent Guszczynski and his roommates looking for a new place to live. At the same time, a friend wanted to buy a house in Sheraden. It was a bit farther for the Pitt grad students he lived with, but the cheap price tag more than made up for it. Guszczynski bought the house.

"And as [roommates] moved out, kids moved in," he says.

At 57, Guszczynski's workweek is anything but normal. Like McDaniel and other local caregivers, he has no dedicated office time, but that also means he has no dedicated off time. His life is dedicated to ensuring he and his kids are healthy and safe.

"I realized like six months ago I've never worked for a for-profit corporation," Guszczynski says. "I'm not supporting the 'global wars factory' as much as most people, and I know a lot of people that are just stuck in 40 hours a week and they're chained by it."

Like any parent, Guszczynski has been put through the emotional wringer: incapacitated with laughter after finding peeled M&Ms in his car or overcome with concern as police help locate one of his kids after a runaway.

Even still, his biggest fear is one shared by McDaniel: What happens to kids when their caretakers die?

"Evan and Austin specifically, but there's also a half dozen other people that I assist," Guszczynski says.

There's a lack of people with the skill and patience to care for the kids he adopts, Guszczynski says. He isn't even able to organize enough care to leave for two full days. It isn't a question of how long it's been since his last vacation — he hasn't had one.

McDaniel unwittingly admitted the same — that something within her always worries what would happen to her cubs should something bad happen to her. Angel would miss her, but is employed and able to live alone.

"She'll thrive," McDaniel says.

JJ, on the other hand, would lose his entire support structure.

"I am ... working toward laying out a plan that would include a third-party special needs trust that, with my life insurance, would be able to buy him a home that is his, and his waiver will cover 24-hour staffing," McDaniel says.

The hard part isn't allocating funds, but — as Guszczynski also says — it's finding competent staff to provide the same amount of around-the-clock attention and care as a parent does.

But when McDaniel and Guszczynski are overcome by stress, experiencing life with their kids always pulls them back.

Guszczynski's years of study and experience taught him to find joy in reading the faces and body language of his kids when so many others can't.

"You can see ... [Evan's] happy to be here, because he has this, sort of, poker face smile that ... ," Guszczynski says. "You can see he's delighted. ... "

For McDaniel, joy comes through much more somatic experiences.

"If you're ever stressed, get a bag of mini marshmallows," McDaniel says. "You put your hand in, and you put every anger, every sadness, every stressor, everything into that throw. And nobody gets hurt."

"Don't get the campfire ones — they sting," McDaniel quickly adds, again looking toward Angel. "She's got a really good arm."