New study reveals barriers to Medicaid-funded home care access

Obtaining home care for older adults with Medicaid can be a complex, multi-step process marked by delays and uncertainty, often resulting in long wait times, according to a new Weill Cornell Medicine study. Medicaid is a joint federal and state program that millions of Americans with limited income and resources depend on for free or low-cost health coverage, including the help needed to age at home. 

The research, published May 26 in JAMA Network Open, found that before care can begin, patients often need to undergo a state-run assessment, enroll in a managed care plan and then connect with an agency that can deliver services.

I was wondering how my patients who want care at home actually connect to the resources they need. Our study showed the system is large, vague and cumbersome."

Dr. Peggy B. Leung, study's lead author, assistant professor of medicine at Weill Cornell and primary care physician at NewYork-Presbyterian/Weill Cornell Medical Center

These findings can help inform clinical care and policy, especially given recent legislation that limits Medicaid coverage and long-term care at home.

The search for home care

Using a secret shopper method, medical student researchers called a random sample of 331 licensed home care service agencies (LHCSAs) in New York in 2024 and posed as grandchildren seeking care for their elderly grandfather with Medicaid, osteoarthritis and depression. They successfully reached 169 LHCSAs—highlighting the difficulty in contacting service providers. Among the agencies reached, 83% said they could take on new patients, and 74% accepted Medicaid, but many could not start the evaluation process for more than a week.

When asked for specifics, nearly 80% of LHCSA representatives had difficulty estimating how many hours of care Medicaid would approve. Among those who gave an estimate, most said that they could provide 10 to 30 hours per week. Agencies frequently cited staffing shortages as a barrier to care. Consequently, families were often quoted about $33 per hour for additional private care—an out-of-pocket expense that could strain those relying on Medicaid to cover care costs, the authors noted.

"This study shows how hard it is for everyday New Yorkers to navigate the system and obtain the care they need to stay healthy at home," said senior author Dr. Madeline R. Sterling, associate professor of medicine at Weill Cornell and Director of the Initiative on Home Care Work at Cornell University's Industrial and Labor Relations School. "It just shouldn't be this difficult for patients and their family members."

The researchers also found that agency representatives varied widely in their knowledge and support. Some provided clear guidance, while others could not answer basic questions about timelines or coverage. A few LHCSAs coached the study callers on how to optimize their eligibility evaluations, advising them to exaggerate their needs to secure more approved care hours. "This could potentially compromise the integrity and equity of the assessment process," Dr. Leung said.

Another potential obstacle to obtaining care is that agencies have discretion over who they want to serve, so people with challenging conditions such as substance use disorder, dementia or mental health disorders may be overlooked.

Need for effective policies and funding

Broader policy changes enabling access to more care and ensuring sufficient staffing are necessary as the aging population grows and prefers to stay at home, said the authors.

Further complicating policy decisions are the many parties involved. Between health care providers, insurance companies and managed long-term care plans, which coordinate long-term services for a set monthly fee, it is difficult to determine who should take responsibility for navigating the process.

"Patients and families need more transparency and resources to navigate the system," Dr. Leung said.

This research was funded in part by the CAROW Initiative on Home Care Work in Cornell University's School of Industrial and Labor Relations, which spans Weill Cornell Medicine, Cornell Tech and Cornell University.