‘There’s a Lot of Unmet Need’: Addressing Long HCBS Waitlists

Home- and community-based services (HCBS) are a way to fill gaps in care for seniors with complex medical conditions, with Medicaid being the main source of coverage for long-term services and supports (LTSS).

As of 2020, over 2.5 million individuals received HCBS services, according to the Kaiser Family Foundation (KFF). Still, there are hundreds of thousands of other individuals on waiting lists, with many forced to turn to the “underground” and unregulated caregiving market.

Some LTSS stakeholders had hoped that the $400 billion investment in HCBS proposed by President Joe Biden would become the solution to shortening those long waiting lists, which could take years to move past. The likelihood of that full amount of funding being realized has been all but erased, however.

“There’s just a lot of unmet need, and there are a lot of people that aren’t getting any services, either because they’re not deemed eligible, or they’re on a very long waitlist for services,” Kathy Hempstead, a senior policy adviser at the Robert Wood Johnson Foundation, told Home Health Care News. “Then there are other people who end up having to receive services in an institutional-type setting when they’d much rather stay at home.”

The Princeton, New Jersey-based Robert Wood Johnson Foundation is a philanthropic organization focused solely on health. Its mission is to “improve the health and health care of all Americans.”

As of 2018, there were nearly 820,000 individuals on Medicaid waitlists for HCBS, according to KFF data.

As for how many people with LTSS needs, that number is about 14 million, according to a new analysis from the Robert Wood Johnson Foundation and the Urban Institute. The analysis suggests LTSS need will grow by more than 60% from 2020 to 2040.

“So not only is it an unmet need,” Hempstead said. “It’s only going to get larger as time goes on.”

Additionally, not all states invest in HCBS equally. The median spending per resident across every state is around $7,000 per state, but there’s much variance between the high- and low-end states.

How to view waitlists

Just as spending on Medicaid HCBS varies greatly across states, the size of waitlists does as well.

But there are a lot of caveats to the waitlist data, Darby Anderson, the chief strategy officer at Addus HomeCare Corporation (Nasdaq: ADUS) and vice chairman of the Partnership for Medicaid Home-Based Care (PMHC), told HHCN.

“This is not something that states track or are required to report,” Anderson said. “So all the data is relatively speculative. I would say, if anything, the waitlists are overstated, but it’s really hard to say. It also doesn’t factor in when folks actually become eligible, or when they have a need for LTSS services.”

In other words, individuals could be sitting on a waitlist and not even be eligible for those services when their time comes, though that does not mean that they don’t need those services.

Additionally, there are cases in which people sign up in multiple counties for HCBS waiting lists using different addresses, perhaps their own as well as a son or daughter’s, AARP’s Susan Reinhard told HHCN.

“Years ago, what we found when we looked into it is that we had people who were registered on a waiting list in more than one county, so that was one error,” said Reinhard, who leads AARP’s Public Policy Institute. “But there is demand, right? There is an unmet need. And I believe it’s substantial. Now, is it 800,000 or more? That’s really hard to answer.”

Because waiting lists are not a requirement, and because they’re not officially tracked, there’s a lot of murky information surrounding them.

On the other hand, though, there’s a chance the numbers are understated, for a wide variety of reasons.

“If someone calls and they hear, ‘We don’t have any slots available, we’ll put you on a waiting list – there’s 2,000 people on there,’ do they just hang up?” Anderson said. “It’s just hard to know if you’re capturing all the people that have needs into the waiting list as well. So that could be an argument that they’re understated.”

There are also ways to – in some cases – jump over the waiting list. For instance, the Money Follows the Person (MFP) demonstration program – which allows individuals to leave a nursing home and be cared for in the home – creates a waiver slot for people in lieu of a spot on the HCBS waiting list.

“Now, I think a person from the nursing home should be able to leave. I’m totally for that,” Reinhard said. “And maybe they should be prioritized because they have already gone into a nursing home, and they improved, or they shouldn’t have been there to begin with. But it gets very, very complicated in these states, is my point.”

The struggle to evaluate waiting lists also leads to legislative troubles.

If the Congressional Budget Office (CBO) is going to put a number on how much it would cost to care for over 800,000 more people, for example, that would be a major dollar sign. But those evaluations don’t always consider the whole picture.

“All they really evaluate is what it would cost if [that many] more people got services,” Anderson said. “What that fails to account for is how many of those people would go to an institution for long-term care services, which would be three times the cost, or how many of those people are sick because they’re not receiving that HCBS support. … They may be higher-cost users of other health care services in Medicare or even Medicaid because of that lack of support.”

HCBS solutions

The Urban Institute and Robert Wood Johnson Foundation laid out three options to address the issue at a federal level in their analysis.

Under the first option, federal funding would increase to support HCBS eligibility, caregiver wages and other services based on a per-community-resident basis. Those residents would have two or more disabilities, which could refer to issues having to do with activities of daily living (ADLs). This would mean additional federal funding, but no less – or more – state spending.

The second option would provide federal funding to increase HCBS spending to the national state median in lower-spending states and replace a certain amount of state spending in higher-spending states so that they could better bolster their programs.

And finally, the third would permanently increase each state’s federal medical assistance percentage (FMAP) for HCBS by 10 percentage points to also support eligibility, wages and services.

“I think that some of the trade offs that you have to think about in designing these options is that you want to create a situation where you’re going to get take-up from all of the states,” Hempstead said. “You want – with whatever you do – to make an option where most or all states would want to take advantage of it, because obviously, if they don’t, then the people that live in those states aren’t going to benefit.”