This article was first published in Idaho Report on Nov. 10, 2023.
Shiloh Blackburn knows she couldn’t survive without community support workers.
She knows she needs them to live independently in her small Pocatello apartment with her two cats, Saga and Excalibur.
What she doesn’t know is whether the state and Congress understand the gravity of the problem.
Blackburn agreed to spend an afternoon with Idaho Report this summer to explain why direct care workers are needed and his concerns about the shortage.
Idaho direct care workers in ‘crisis’, state legislative committee reports
Blackburn, president of the Idaho Council on Independent Living, has cerebral palsy and other physical disabilities that force her into a wheelchair. She also suffers from seizures and has developmental disabilities. She doesn’t want to live in a group home, and she doesn’t want to rely on her parents. Blackburn, 48, knows that as they get older, they won’t be able to care for her the way they did when she was a child.
“They help me get out of bed and into a chair,” Blackburn said of the support workers, “and just to be clear, once I’m in bed, I can’t get out of bed on my own. Once I’m in a chair, I can’t get out of the chair on my own. I need help. So if I don’t have someone on shift, I’m in trouble.”
Two caregivers take turns coming to her apartment each day to help her get into her wheelchair, take care of her hygiene, cook for her, get her medicine, help her with errands and keep her company.
“Basically, all of my independence is down to them,” Blackburn said.
These issues aren’t just hypothetical: Recently, Blackburn was left stranded in the bathroom for six hours after a new caregiver didn’t show up for a shift.
Blackburn is on Medicaid and Medicare and uses those funds to pay her caregivers’ salaries. She has a self-managed services model, which means she can hire her own caregivers using her government-allocated budget.
Idaho Office of Performance Evaluation report shows growing need for direct care workers
The Idaho Department of Performance Assessment released a direct care workforce sustainability report this year estimating that 33,000 seniors and people with disabilities in Idaho rely on direct care workers. The report estimated that the state needs at least 3,000 more direct care workers than it currently employs, a problem that will only get worse.
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In September, the Joint Legislative Oversight Committee heard stories from members of disability advocacy groups about their experiences finding consistent care, some of which brought committee members to tears.
Juliet Sharon, director of the Idaho Department of Health and Human Services’ Medicaid division, acknowledges that a shortage of direct care workers is a problem and that Medicaid pay rates are a major cause.
“There are many factors that go into the rate review process, and I recognize that for home and community-based services, rate increases are long overdue,” Sharon said. “The Legislature has approved a number of rate increases over the past two sessions, which is great, but I think we’ve only just scratched the surface of what’s needed.”
Sharon said the problem has been exacerbated by the COVID-19 pandemic as workplaces such as Amazon and fast-food chains have started to offer higher wages.
“One of my biggest concerns is that caregivers are paid less than other professions,” Blackburn said. “Right now my caregivers don’t have benefits, they don’t have paid vacation or holiday pay because there’s not enough budget. … They work really hard and they really care about me and they want to make sure I get the care I need, but at the same time, they have their own lives and their own needs.”
The Larsens: Lack of routine is hard for special needs child
For Rochelle Larsen of Rigby, the help of a direct caregiver has allowed her to better care for her family. She has five children, two of whom have disabilities. Her 14-year-old son, Abraham, has been diagnosed with oppositional defiant disorder, attention deficit hyperactivity disorder, psychiatric disability and intellectual disability. Her 10-year-old daughter, Brynle, has Down syndrome.
Her family uses Medicaid family support services for their two children. Abraham receives 10 hours of mentoring per week from a rehabilitation interventionist through the agency. She and Brynle also spend several hours per week with a support services worker who helps them care for their family.
“We’ve seen a steady increase in turnover over the past few years,” Larsen said, “to the point where we’re on a waiting list to get services. We’ve had four staff members working here in the past year, but for about four months, none of them have been able to work.”
Ms Larsen said the lack of routine can be hard for children with special needs, with Abraham struggling with behavioural issues without a supportive person.
“Just when you think you’re making some progress, the teacher changes or quits, and you feel like you have to start all over again,” Larsen says. “It’s frustrating as a parent to see your child make some progress only to see them regress again.”
Their daughter has support staff who work with Brynl to achieve her goals while her parents tend to the family’s other needs.
“We can’t pay what other companies are paying, so it’s really hard to keep employees on a steady wage,” Larsen said. “Most of our employees have other jobs, so they’re very limited in the amount of time they can work with their kids.”
The Larsens try to make their caregivers feel like part of the family, trying to supplement their budgets when they can and sometimes even bringing them on vacations with the family.
Larsen said staff also help provide short respite for parents of children with disabilities.
“We’re always with our kids,” said Larsen, who is home with her children, “so when you’re always doing something for someone, it’s nice to have someone come and take a break and recharge and come back and be a really good parent to your kids.”
Larsen stressed that paying direct care workers more is essential to closing the shortage.
“It’s very exhausting work, working with people with disabilities is hard,” Larsen said. “It’s physically demanding and, in the case of my son Abraham, it’s mentally and physically exhausting, so it would be great to be paid for the work.”
Ms Larsen also argued that care workers should be treated with more respect, rather than as “glorified babysitters”.
“They’re doing so much more,” Larsen said. “They’re working on goals and outcomes and trying to help kids contribute to society.”
Solving Idaho’s direct care worker problem
The Department of Health and Human Services wants to streamline training for agencies that hire new direct care workers as employees leave and replacements are hired.
Health and Human Services Commissioner Dave Jeppesen told the state’s Joint Legislative Oversight Committee in September that the state has increased Medicaid reimbursement rates for home- and community-based services in recent years, which has led to higher pay for care workers. In fiscal year 2023, the Legislature provided the health department with $230 million for rate increases, and in fiscal year 2024, it allocated $25 million to the health department for rate increases. In its pending fiscal year 2025 budget request, the health department is asking for an additional $46 million.
The Medicaid department also wants to promote a campaign for direct care workers and encourage people to pursue it as a work option.
Sharon said the ministry also hopes to work with stakeholders to come up with recommendations.
“So we’re looking at proposals other than fees,” Sharon said, “and I want people to understand that this isn’t going to happen overnight. Solutions aren’t going to happen overnight. This is probably not just a Medicaid issue, but it’s definitely an issue that deserves attention and needs attention.”
She said that applies not only to home health care but also to direct care staff at the facility level.
“This is a national crisis and it’s a crisis in Idaho. People’s lives are being impacted every day today,” Sharon said. “Again, having direct care staff available for a variety of services is literally a lifeline for many people. This support allows people to live safely in their communities.”
Sharon knows of understaffed facilities struggling to keep things running and people with disabilities showing up to emergency rooms in need of care.
“But if someone can safely live independently in their own home or in the community with some support, we want to get them there for their quality of life,” Sharon said. “And from a state perspective, it’s more economical to have them in the community than institutional level care.”
At a recent “Our Care Can’t Wait Coalition” legislative luncheon, Senate President Pro Tempore Chuck Winder told Idaho Report the issue is a concern for lawmakers.
“I don’t think there’s any question that this issue will be discussed and raised,” he said. “It’s just a matter of whether some kind of solution will be offered.”
“So there’s work to be done through the JFAC and the relevant committees on these issues to figure out what makes the most sense and how to move forward,” Winder said. “I think through the OPE report and other reports, it’s finally been recognized that there is a problem and it needs to be solved. This is an issue that basically every business has, how do you pay people and attract them to do a service that’s needed in the community? I don’t know if that’s going to happen, but it’s certainly going to be moving forward and it’s going to be discussed and there will be public hearings.”
Larsen noted that anyone can become disabled at some point — whether through accident, illness or simply aging — and most people will eventually need care.
“If you have an accident or become disabled as you get older, how do you want to be treated?” Larsen says. “How do you want to be treated? Who do you want to be caring for you? What kind of training do you want to receive? Do you want to be paid enough so that you value your work and love what you do? I think everyone should be thinking about that.”