States Raising the Bar for Long-Term Care, Support Services

Long-term care for the elderly and disabled is driving up Medicaid costs, and states should take notice. That was the message of speakers at the 2015 CSG Medicaid Policy Academy held June 17-19 in Washington, D.C. 

“In nine states, at least 30 percent of Medicaid enrollees are elderly or disabled,” explained Matt McKillop, an officer for the State Health Care Spending division of The Pew Charitable Trusts.  

The main source of funding to provide long-term care and support for these individuals streams from Medicaid through state budgets. McKillop highlighted national data from the Centers for Medicare and Medicaid Services that showed the elderly and disabled individuals comprised 24 percent of Medicaid enrollees in 2010, but accounted for 64 percent of total Medicaid expenditures in the states.

“As a result of (elderly and disabled Medicaid enrollees’) high cost per capita, the proportion of a state’s Medicaid beneficiaries who are elderly and disabled is a major cost driver of Medicaid spending,” said McKillop. “On average, Medicaid spends over five times more on these people than on parents and children with Medicaid coverage.”  

Adults are living longer and, just like the millions of disabled and chronically ill individuals around the nation, demanding more services while remaining at home in their own communities. 

“It’s up to (state governments) to figure out how to solve this problem, using innovation and creative ways to garner more support through Medicaid for long-term care and support services,” said Matt Salo, executive director of the National Association of Medicaid Directors.

One option states are pushing is the use of family caregivers—or individuals who provide care and direct assistance to an elderly, disabled or chronically ill family member or significant other—usually at no cost. According to AARP, more than 42 million family caregivers across the country have provided an estimated $450 billion in unpaid care since 2009.  

Experts say that without the services of family caregivers, states would have to absorb the cost. 

“The interesting thing about (family caregivers) is that they are not asking or demanding help, because they feel obligated as a family member to do so,” said Elaine Ryan, AARP’s vice president of state advocacy and strategy integration, who was a family caregiver for her elderly parents. 

But states should do more to support family caregivers, she said. 

One way states are doing that is through new legislation.

In 2011, Connecticut became the first state in the nation to pass a paid sick leave law, which required employers to provide qualifying workers with paid sick leave that can be used for the employee or an immediate family member who is sick or involved in family violence. 

In Indiana, where 1.34 million family caregivers provide unpaid care totaling nearly $9.4 billion annually, state legislators—including Rep. Ed Clere, chairman of CSG’s Health Public Policy Committee—are championing legislation to better support the state’s long-term care and support system by providing family caregivers greater access to information and services when their family member or loved one receives medical care. Clere helped to pass legislation in Indiana that supported open access for patients and caregivers to patients’ electronic health records. 

Clere also helped to pass legislation developed by AARP to support family caregivers in his state.

Ryan said 15 states, including Indiana, have passed the Caregiver, Advise, Record, Enable  Act, also known as the CARE Act. The legislation has three main provisions. Upon admission to a hospital or rehabilitation facility, the name of the family caregiver must be recorded; the assigned family caregiver must be notified if the family member is discharged to another facility or released to go home; and hospitals and rehabilitation facilities must provide explanation and in-person instructions to the family caregiver about medical tasks that need to be performed at home.  

Connecticut Sen. Mae Flexor was driven by personal experience to pass similar legislation this year. 

“My father was discharged from a hospital and given discharge instructions on how to care for a wound he couldn’t reach. No one in the family was notified of his discharge,” she said. 

According to Ryan, the need to better support family caregivers isn’t solely a policy issue; for many, it will become a personal issue.

“You are either a caregiver now or will need one in the future,” she said.