When Kees Beehner wakes up in the morning, he’ll be greeted by his caretakers. They’ll help him get dressed, eat breakfast and put his shoes on.
Kees, a 30-year-old who has cerebral palsy and an intellectual disability, lives in something called a certified family home. There, he and two roommates receive 24-hour care while maintaining as much independence as possible.
The people who work with Kees are employees at Opportunities Unlimited, a nonprofit that provides programs and direct care services to people with disabilities.
They take him to physical therapy, doctor’s appointments, group activities, and, twice a week, bring him to his job, where he’s given tasks like paper shredding or helping assemble product packages.
Caregiver Melanie Heald is helping Kees get ready for work. She’s talking with him about the music he likes to listen to with his friends when they’re on a shift together. Music is one of Kees’s favorite things in the world.
“He hasn't sang honky tonk in a while, but ‘Honky Tonk Badonkadonk’ is, like, one of his favorite songs,” she said, laughing.
Some of the other things Kees likes: cowboys, the character Woody from “Toy Story,” chicken nuggets, pizza and spicy chips.
“He's a big flirt too, 'cause he'll, he'll tell you you're cute,” she said. “And he's just really funny.”
Until a few years ago, Kees lived with his parents, who remain a big part of his life. On Saturdays, his mother, Stephanie Beehner, comes and picks Kees up, takes him swimming or for family dinner, and also takes him to church on Sundays.
But Stephanie said her son moving into a home with support from direct care workers allowed her freedom she didn’t have as a full-time caregiver.
Previously, Stephanie needed to take Kees with her to work, severely limiting the kind of jobs she could take on.
“Before, I’d do house cleaning or some helping with preparing Sunday school materials at church. So, was jobs, but not anything that was really developing my work world skills,” she said.
Living in his own home with 24-hour care has also allowed Kees more independence, Heald said. Even for people with intellectual or developmental disabilities, living with parents can start to feel chafing as they grow into adulthood.
“Everybody, once you become an adult, you don't necessarily wanna live with mom and dad,” she said. “He still has that sense of independence.”
Caretakers like Heald help with functions of daily living such as showers and preparing food. But their work doesn’t end there. Part of her job involves helping Kees maintain social connections.
When we get to Kees’s work, one of his longtime friends, Corey Berg, is there.
“I’ve been here 25 years. Coming on 26 years. I have fun with Keesy, (when) he's around. Right Kees?” he says, to which Kees gives an affirmative “yeah” in response. “You’re my favorite friends.”
The two share a love for music.
“Like Prince, Michael Jackson, Cyndi Lauper,” Berg said. “Mine is kinda ‘80s, Kees likes the country.”
Through all of this, Heald is at Kees’s side. After his shift ends, the two pick out CDs at the thrift store, including gospel music, a Neal McCoy album and a CD titled “Original Cowboy Poetry.”
In the United States, about 4.5 million direct care professionals are doing similar jobs, working with people with disabilities and seniors, according to the Paraprofessional Healthcare Institute.
But the professionals who do that work often struggle to make a career out of it, especially in states like Idaho where already limited Medicaid funding that pays for those positions is sometimes threatened.
“We were just extraordinarily blessed to not have (our Medicaid funding) slashed,” said Kelly Head-Halliday, president of the Idaho Association of Community Partners. “Because they are looking for ways to significantly cut Medicaid. And that's still on the table. We face new challenges every legislative session.”
Direct support professionals, or DSPs, also say the field, for the most part, lacks a career ladder or adequate benefits. Part of the problem, they say, is a lack of funding. Another part may be that despite millions of workers in the field, the Bureau of Labor Statistics has no category for DSPs.
“ So we're just combining other categories, which are at best close approximations of three different BLS categories, with percentages here and there. Which does affect how most rates are established,” Head-Halliday said.
Hallie Beal has worked as a DSP at Milestone Decisions for 17 years. It’s a Moscow, Idaho-based nonprofit that provides direct support to people with disabilities.
“Trying to make this a career, even if it's what you love to do, is a huge, huge challenge,” she said. “I spent many a year working at Walmart for the purpose of benefits and working at Milestones. Most people can't do this as a career unless they have a significant other that has good benefits.”
Though funding and professional recognition of DSPs has left hurdles for people trying to work in direct care, the need for jobs like Heald’s is expected to grow.
PHI projected the direct care workforce to add just over 860,000 new jobs through 2032. Direct care workers say they want to see more recognition and support for the jobs they do.
“It wasn't that long ago that they did used to just throw people in facilities and in institutions, and they weren't getting the proper care. So, my job is really important to keep people in their homes and not just be put somewhere and forgotten about,” she said.
Like many other direct care workers, Heald said she first started her job after caring for family members. The job is something she’s passionate about, she said, despite the high levels of stress and burnout many direct support professionals report.
“Just because somebody can't verbally communicate doesn't mean that they don't have something to say,” she said. “Instead of trying to get them to communicate in our world and bring them to us, you meet them where they're at.”
Back home, Heald helps Kees go through his new music. Heald tells Kees he has some country albums.
“Oh my!” he exclaims, his movements growing excited “Oooh my.” Melanie helps Kees sit in his chair, where he immediately reaches to turn on the player to listen to his music.
“Ready, set, go!” Kees says. He presses the start button. A rendition of “Amazing Grace” starts playing. After a minute he turns and waves. “Bye,” he says, indicating he’s ready for the group to leave.
Melanie closes the door, taking one last look at Kees sitting, transfixed by the music. Her shift for the day is nearing its end — but she’ll be back soon.
Note: This story was part of a radio special on caregiving. You can listen to the entire episode here.
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