Behind The Emerging Trend Of Self-Directed Home-Based Care In The US

More home-based care agencies are turning to family members and loved ones to fill staffing needs.

This is the case with both seniors and children being cared for in the home. Even the White House has recently been supportive of the paid family caregiver model.

A recent study from Northwestern University could also bolster support. It found that children who received care from family members trained as CNAs were not more likely to be hospitalized compared to children cared for by traditional CNAs.

The study also found children cared for by family members experienced greater care continuity because turnover was not as much of an issue.

“We’ve known for a long time that children with disabilities and chronic conditions at home have had trouble accessing in-home care,” Carolyn Foster, a pediatric researcher at the Ann and Robert H. Lurie Children’s Hospital in Chicago, told Home Health Care News. “There was already an underlying problem of having trouble getting people to work in the home health care industry. Now there’s research that shows parents of children who have medical needs will have to essentially drop out of the workforce to provide their child services because they have trouble getting an in-home provider.”

The same can be said for the senior and special needs populations.

“A lot of agencies, in New York state specifically, target the aging population and the decision makers there because that’s typically who receives home care services,” Megan Shergill, VP of CDPAP services for Community Care Home Health, told HHCN. “We pride ourselves in being knowledgeable in not only the aging population but specifically the special needs community. That — I think — is our differentiator.”

Community Care Home Health is a New York-based provider that offers medical and non-medical home-based care services. Its census is about 1,000 patients.

New York’s Consumer Direct Personal Assistance Programs — also known as CDPAPs – allow a Medicaid beneficiary to hire a family member, a loved one or a friend to be their caregiver.

Shergill joined Community Care Home Health about a year ago. At that point, consumer-directed care was about a quarter of the business. Today, it’s about 40%.

“It’s growing tremendously and we’re scaling quite quickly,” Shergill said. “We started to see growth initially around 2020 in the early days of the pandemic when people were hypersensitive about who was coming to their homes. But even more so in recent years, as we’ve done more and more community advocacy and education, we found that community members and professionals don’t realize consumer-directed home care models are even an option.”

The flexibility to pay family members through Medicaid for home-based care services varies by state. Some states won’t allow a family member to be paid for those services at all.

Others, like Colorado, have gone above and beyond to make it easier for family members to become paid caregivers.

Colorado’s Medicaid program – which was at the center of the Northwestern study – will assist family members to become licensed CNAs, which allows home health agencies to hire those family members.

“We were interested in seeing whether those kids were more likely to get hospitalized, if they got sick more often and what the costs looked like,” Foster said. “We ultimately found that, at least for the number of hospitalizations, it was the same. We also found – which was kind of profound but not really surprising – that there was this incredible continuity in care. A huge problem for these kids is that even if they do get a home health care provider, there’s huge turnover and the people who take care of them don’t get to know them very well and then leave their job.”

The same issues exist in home-based senior care.

AssuranceSD is a self-directed care company that serves more than 8,000 individuals across 10 states. Mubeen Malik, the company’s CEO, said that by giving a recipient as much control over their care as possible, there’s a greater chance of continuity.

“The ability to designate a family member, a friend or somebody that they are personally involved with is something we have seen lead to very, very strong retention rates,” Malik said. “Whether that’s running through a full recruitment process themselves or designating somebody who may already be an unpaid caregiver, if you compare that to the more traditional models where consumers may not necessarily have any say in who’s assigned to them as their caregiver, there’s going to be higher rates of attrition in that latter model. At least from our observations.”

Continuity of care is generally vital to the quality of care, Foster said. There’s research to back it up.

Self-directed care also tends to be cost-effective.

“We would argue that this kind of care potentially might lead to cost reduction,” Foster said. “Because we know that hiring people costs overhead, hiring and training people has costs and the parents in our study were actually paid on average a little bit less, so the hourly labor was lower. I wouldn’t say I would advocate for that, but we also found that they provided more hours of care and were more available versus the people that were coming from the outside.”

AssuranceSD is primarily focused on self-directed care in part because Malik and his colleagues saw the macro trend of more people in need of home-based care and the supply of caregivers to address that need being “severely imbalanced.”

“We believe that self-direction is a very powerful tool in the HCBS and LTSS ecosystem to address that,” Malik said. “Specifically, what we think is so powerful about self-direction is it’s really nicely aligned to the CMS triple aim of experience, quality and cost. If you can get that right, which self-direction will predispose because you’re enabling somebody to take control over that element of their care, you’re increasing the probability that the triple aim is being met.”