How to track the devastating impact of a growing home nursing shortage

Placing a parent or grandparent in a nursing home can be a gut-wrenching decision. Now imagine having to make that choice for a 1-year-old infant.

Families across Indiana are now faced with that agonizing decision due to a chronic shortage of home nurses that has reached crisis levels. The families have been pre-approved for home nursing care, and the state has agreed to pay for it. But there are no nurses to care for many of the state’s most medically fragile patients.  

A November documentary I reported with WTHR-TV’s 13 Investigates unit exposed the daunting and tragic impact of the home health care crisis on thousands of Indiana patients, their caregivers and nurses. “Gasping for Care” explored the complex factors contributing to the nursing shortage, as well as state leaders’ controversial decision to divert hundreds of millions of Medicaid dollars to road construction projects and a new swine barn at the Indiana State Fairgrounds rather than spending the money on its intended purpose: providing much-needed health care for vulnerable residents.

The crisis is not limited to Indiana, and it is expected to significantly worsen as the nationwide demand for in-home nursing skyrockets — just as experienced nurses prepare to retire in record numbers. Here’s a closer look at what our investigation revealed and how you can explore similar issues in your community.

Focus on the human impact

At the heart of the project are emotional stories from families living with the daily impact of the home nursing shortage, such as Tyesha Wright and her 1-year-old daughter Desire.

Because Desire was born almost four months early, doctors inserted a tube down her throat so she could breathe with a ventilator while she grew stronger. After nine months in the hospital, it was time for Desire to go home. Doctors at Riley Hospital for Children released the infant — even though she was still using a portable respirator to help her breathe — because Indiana’s Medicaid program approved 18 hours of home nursing care every day for Desire.

“The moment we left the hospital, we were supposed to have a nurse,” Wright said.

But she never got a call or a knock on the door. Nine months after Desire left the hospital, Wright continues to call dozens of home health care agencies every day in search of a nurse. She even moved from Lafayette to Indianapolis after an agency suggested a move might increase Wright’s odds of finding in-home nursing care. It didn’t work. Home health care agencies across the state have all told her the same thing:

“They said they don't have any one available, or they aren't trained or the wait list is too long … they just don't have them,” Wright said, choking back tears. “It's unfair because the only option that they give us is to basically give our kids up to a facility.”

Meanwhile, Desire has been readmitted to hospital intensive care unit several times for breathing-related problems that, her mother believes, would have been avoided if a home nurse had been present. She says those hospital stays have cost the state Medicaid program over $100,000 – far more than the cost of home nursing care. And Wright has been unable to work or earn an income to pay for her family’s rent, food, utilities and medical bills because, without home nursing care, she cannot leave her daughter’s side.

Why it this happening?

To understand the uphill battle facing Wright and other families, we followed the money. Many seriously ill patients who get home nursing care get it through their state Medicaid program, and each state is allowed to set its own Medicaid reimbursement rates for home nursing services. 

Indiana’s Family and Social Services Administration (FSSA) has not adjusted some of its home nursing reimbursement rates in more than a decade. The rates it has changed have barely budged. For example, Indiana’s reimbursement rate in 2008 for an in-home licensed practical nurse (LPN) was $26.79 per hour, compared to $27.82 in 2019 – less than a 4% increase over the past decade. The state’s reimbursement for home health aides is less now ($18.88 per hour) than it was in 2008 ($19.10 per hour).

And those Medicaid reimbursement rates do not represent the amount of money actually paid to nurses, who are legally required to contract their services through a state-licensed home health care agency. The agencies must deduct overhead for insurance, training, regulatory compliance, scheduling and other costs. That means LPNs who work in home health care in Indiana earn approximately $19 per hour – far less than the hourly rate they could make working in a nursing home ($25) or a hospital ($27), and with far fewer benefits like vacation pay, overtime and health insurance.

As a result, home health care agencies in Indiana cannot attract or retain nurses, and the ensuing shortage is felt statewide:

• One home health care agency told WTHR it has lost more than 200 nurses in recent years due to Indiana’s low Medicaid reimbursement rates.
• Those low rates left an Indiana woman trapped in hospitals and nursing homes against her will for nearly three years. Even though the patient was medically authorized to go home and the state had approved round-the-clock home nursing care, no home nursing agency in Indiana would agree to provide the woman with home nursing care at the low rates authorized by the state. As a result, the patient was unable to live at home. She eventually sued the state agency in federal court for the right to go home, and she won.
• Some in-home nurses have resorted to withdrawing money from their retirement savings plans and working second jobs just to make ends meet.
• A prominent doctor at Indiana’s largest children’s hospital reported some of her patients died after they were discharged due to the state’s low reimbursement rates and worsening in-home nursing shortage.
• “Gasping for Care” showed most state officials were unaware of the crisis, and those who did know have been unable or unwilling to find solutions. The state instead directed unused Medicaid funds to a variety of unrelated projects and padded the state’s $2 billion budget surplus. 

Where to look in your state

To explore this topic in your community, begin by contacting local home health care staffing agencies to see if they are able to keep up with the demand for home nurses.

Every private staffing agency contacted by our team has a long waiting list and said they are now denying service requests on a daily (if not hourly) basis. They were happy to talk on the phone and to meet in person to share the struggles faced by their nurses and clients. Those agencies were also able to connect me with families and nurses willing to be profiled for the investigation.

Longtime agency administrators helped explain the history of the problem and the specific shortcomings of state funding formulas, while also directing our investigative team to the stakeholders at the state level who establish Medicaid reimbursement rates for home health care.

Reporters should also reach out to the government agency (or agencies) in your state that oversees Medicaid funding. Ask to talk with both a policy expert and a financial expert to better understand the inner workings of your state’s programs for home nursing care reimbursement. The bureaucracy is different from state to state. Ask how much Medicaid money is budgeted for home nursing care, how many hours of in-home care the state approved through its various Medicaid programs, and how many of those hours were actually used. Indiana has not yet released those numbers to WTHR, and it is not clear if state leaders simply don’t track those important details or are just unwilling to disclose them.  

While state officials in Indiana were reluctant to discuss the widespread home health care shortage, regional and local agencies contracted by the state were much more willing to talk due to their frustrations with burdensome regulations and outdated reimbursement formulas that prevent services from reaching families desperate for home nursing care. Those agencies also helped connect us with families eager to talk about their daily struggles.

Easy numbers to find

There is plenty of national data to establish the urgency of the home health care nursing shortage. Online searches will quickly reveal the rapidly rising costs of both nursing home care and home health care, the staggering turnover rate among home heath care workers (largely attributed to low pay), and the huge increase of nurses needed to care for an aging baby boomer population — all amid a backdrop of strong preferences by seniors to grow old and to be cared for at home rather than in an institutional setting.

To see where your state stacks up — specifically, its commitment to funding home health care and, more generally, its commitment to funding long-term care for the elderly and residents with disabilities — try checking out two revealing documents:

The first is the most recent “Medicaid Expenditures for Long-Term Services and Supports” report produced by Medicaid’s Innovation Accelerator Program. Page 11 of the 154-page report provides an easy-to-understand chart showing the total percentage of Medicaid dollars that each state spends on home-based care relative to its overall long-term health care services budget. (Indiana happens to be 49th on the list, behind only Mississippi, and spends only 32% of its Medicaid long-term services budget on in-home care while the rest goes to nursing homes and hospitals. By comparison, the national average for state Medicaid spending on home-based care is 57% of the long-term services budget.)

The second eye-opening document comes from AARP. The organization’s “Long-Term Services and Supports State Scorecard” measures state-by-state performance on services intended to serve people with long-term conditions, disabilities or frailty. (Indiana is dead last, due in part to the high cost and poor access to these services throughout the state.)

These state-level statistics can provide crucial context for the emotional stories you will likely hear from families and nurses caught in a nationwide home nursing shortage that impacts millions of people every day.

Bob Segall is senior investigative reporter at WTHR-TV in Indianapolis.