Democrats Discuss Scaling Back A Key Caregiving Initiative By Half -- Or More

A proposed expansion of services for the elderly and people with disabilities faces major budget pressure.
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A Democratic proposal with the potential to transform life for the elderly and people with disabilities may get less than half the funding its champions envisioned, according to multiple sources involved in Capitol Hill deliberations.

The proposal would dramatically strengthen federal support for what are known as “home- and community-based services,” or HCBS for short. It’s a catch-all phrase for programs that make it possible for elderly and disabled Americans to live on their own, outside of institutions. In practice, it can mean everything from caregivers who help with hygiene to nonprofit organizations that help with housing and job placement.

President Joe Biden and Democratic leaders have said repeatedly that they want the home and community proposal to be part of the large spending legislation they are now writing and hope to pass this year. But they are saying the same thing about other initiatives, like proposals to add dental coverage to Medicare and get Medicaid to people in Republican-led states that haven’t expanded their programs.

Fitting all of these ideas into one piece of legislation is proving difficult, especially with more conservative Democrats agitating to make the package smaller and less expensive. Leaders have responded by downsizing some of the component pieces and, at the moment, the home and community proposal appears to be in line for one of the more substantial cutbacks.

“If Congress were to insist on $150 billion ... it would be a staggering betrayal of the disability community.”

- Matthew Cortland, Data for Progress

Instead of the $400 billion over 10 years that Biden and congressional leaders proposed initially, they are talking about spending somewhere in the range of $150 billion to $250 billion, according to several sources on and off Capitol Hill who requested anonymity in order to speak candidly about the ongoing negotiations.

The situation is fluid, with multiple conversations involving Congress, the White House and outside groups happening simultaneously. Even a partially funded version of the home and community initiative would represent a historic increase, enough to have a substantial effect on the lives of everyday Americans.

But especially at the lower funding levels under discussion, advocates say, it would be difficult to achieve the proposal’s intertwined goals: making sure the services are available to everybody who needs them while raising caregiver pay enough to attract and retain well-qualified workers.

A Legislative Version Of ‘The Hunger Games’

Helping millions of older and disabled Americans to live outside nursing homes and other large institutions has been a goal of government policy for roughly half a century.

But that goal remains elusive. Hundreds of thousands of people are on waiting lists for programs because states have capped enrollment, with potentially hundreds of thousands more not even bothering to get on the lists because the waits would be so long. Still others can’t find caregivers because low pay has created labor shortages. The quality of programs also varies wildly.

A common element in these problems is limited funding from Medicaid, which states manage with the help of federal funds and in accordance with federal guidelines. Under legislation co-sponsored by Sen. Bob Casey (D-Pa.) and Rep. Debbie Dingell (D-Mich.), the federal government would offer the states extra Medicaid funds to support home and community programs. In exchange, states would have to meet certain conditions, like raising caregiver wages.

Conservative Democratic lawmakers including Sens. Kirsten Sinema of Arizona (foreground) and Joe Manchin of West Virginia (far left) have tried to scale back the big spending bill Democrats want to pass this fall. That has made it harder to find enough money to fund the bill's components, including the proposal to bolster home- and community-based services for elderly and disabled Americans.
Conservative Democratic lawmakers including Sens. Kirsten Sinema of Arizona (foreground) and Joe Manchin of West Virginia (far left) have tried to scale back the big spending bill Democrats want to pass this fall. That has made it harder to find enough money to fund the bill's components, including the proposal to bolster home- and community-based services for elderly and disabled Americans.
Kevin Dietsch via Getty Images

The $3.5 trillion agenda that Biden outlined this spring set aside $400 billion of that sum for home and community care. But with ultra-thin majorities in Congress and Republicans united in opposition, Democratic leaders need virtually every member of their House caucus and literally every single one in the Senate to support the final spending legislation. And more conservative Democratic lawmakers, such as Sens. Joe Manchin of West Virginia and Kirsten Sinema of Arizona, have said $3.5 trillion in new spending is too much.

On Tuesday, Axios reported that Manchin wants to bring the total down to $1.5 trillion.

That has put financial pressure on the entire Democratic agenda, which includes initiatives that subsidize child care, create a national paid leave program, make community college free and promote green energy. It also includes a series of distinct health care initiatives.

In addition to the proposals to fill in the conservative-state “Medicaid gap” and to give Medicare dental, vision and hearing benefits, Democrats want to make permanent a series of temporary improvements to the Affordable Care Act that they put in place in early 2021, when they enacted COVID-19 relief legislation.

Nearly every one of these initiatives has powerful supporters and powerful arguments on its behalf. Nearly every one polls well. Nearly every one would require substantial new outlays of government money.

The result is a competition for resources among lawmakers and outside groups who are generally close allies. One operative speaking to HuffPost likened the dynamics to “The Hunger Games,” the dystopian novels in which a barbaric government selects children for death matches.

But advocates for home and community programs say that it should be possible to finance that initiative fully, alongside other priorities, as long as Democrats are willing to raise taxes enough on the wealthy to pay for it.

“Congress needs to include all $400 billion ... and pay for it by reforming the tax code so that billionaires and international corporations pay their fair share,” Alex Lawson, executive director of Social Security Works, told HuffPost. “We unequivocally reject the notion that money for one health care priority takes away from another. We are the wealthiest country in history, and we refuse to leave anyone behind.”

The Potential Downsides Of Downsizing

The budget resolution that Congress passed in August didn’t actually specify how much money individual initiatives would get. It just gave a set of instructions to each committee in Congress, with a target for how much money it should raise or spend using the programs within its jurisdiction.

But the document had some built-in assumptions, and one of them, according to sources, was that the home and community services would get just $150 billion over the 10-year period Congress uses for planning. Supporters have been working on leaders in both chambers to raise that number. Several have told HuffPost that Senate leadership has indicated a willingness to go to $200 billion, maybe even $250 billion, while House leadership has been more reluctant to go beyond the $150 billion.

“The states need a clear signal that the federal government is committed to this. Otherwise the policy won’t work.”

- Nicole Jorwic, The Arc

Preliminary, unpublished estimates from the Congress Budget Office suggested it might be possible to achieve most of the legislation’s goals for less than $400 billion, and maybe a lot less depending on details and still-evolving CBO scoring methods, according to sources involved in the negotiations.

But those sources said the numbers under discussion, especially that $150 billion figure, wouldn’t leave enough to wipe out waiting lists, as champions of the proposal have vowed to do, while simultaneously raising caregiver wages. “There doesn’t seem to be an understanding that this is a policy that ... can’t be cut down to the extent that we are hearing is being considered,” Nicole Jorwic, senior director for public policy at The Arc, a disability rights organization, told HuffPost.

One budget strategy Democrats are likely to adopt with some other initiatives is to “sunset” them ― that is, to enact them for only a few years in the hopes that future lawmakers will extend the programs before they expire. But advocates like Jorwic worry that state officials would be wary of expanding their programs if there’s a chance the extra federal funding will disappear after a few years.

“The states need a clear signal that the federal government is committed to this,” she said. “Otherwise the policy won’t work.”

Supporters of the home and community proposal say its price tag is deceiving because money spent on care for somebody in their home or through a community program in some cases will mean money not spent on care for that person in a nursing home. They also say the need for more funding has never been more clear, given the huge toll COVID-19 has taken on people in nursing homes, which are often the only alternative for elderly and disabled Americans who can’t get support to stay in their homes.

“If Congress were to insist on $150 billion ... it would be a staggering betrayal of the disability community that has disproportionately suffered devastating losses during this pandemic, Matthew Cortland, a senior fellow at Data for Progress and a high-profile disability rights advocate, told HuffPost.

This story has been updated following new information about the latest CBO estimates, provided by several sources privy to the discussions.

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