Home-based care advocates say they are confident measures outlined in President Joe Biden's now-stalled Build Back Better Act will move forward in some form.

The legislation aims to expand access to services to older adults and people with disabilities, as well as boosting pay for workers who provide home-based care. Currently, more than 3.5 million people rely on Medicaid's Home and Community Based Services (HCBS).

Connie Garner, national policy director for Easterseals, explained demand for home care has outpaced resources, and as a result, more older adults end up in nurse homes.

"That costs more money, that causes more isolation, and that's not what we should have in this country," Garner asserted. "We should have the ability to have people be able to be taken care of correctly at home. And we have to be able to pay and support the providers of that care. They become an essential member of that family."

According to the research firm Paraprofessional Healthcare Institute, more than two million home care workers earn around $16,000 per year, and one in six live below the federal poverty line.

A report by the ICA group found West Virginia is facing a troubling home-caregiver shortage with one caregiver available for roughly every 11 clients.

In Washington, lawmakers say portions of the Build Back Better Act will likely pass this year, but it remains unclear whether the $150 billion earmarked for Medicaid HCBS will remain intact.

According to the Kaiser Family Foundation, in 2020 more than 2.5 million people nationwide received Home and Community Based Services, with hundreds of thousands more on wait lists.

Amber Christ, director of health policy and advocacy for Justice in Aging, said families are forced to make tough choices.

"From an older adult perspective, this lack of investment in home and community-based services in effect pushes older adult into nursing facilities unnecessarily," Christ contended.

A survey by AARP found 76% of Americans age 50 and older say they prefer to remain in their current residence as long as possible, but just 46% anticipate they will be able to stay in their current home.

Arizona is currently in last place nationwide in terms of nursing home residents and staff being up-to-date on their COVID-19 boosters.

That's according to AARP's Nursing Home COVID-19 Dashboard.

"Up-to-date" means a person has gotten the new bivalent shot, or has completed the primary series of vaccines or boosters within the last two months.

In Arizona, 22% of nursing home residents and only about 15% of staff are up-to-date.

Alex Juarez - communications director with AARP Arizona - said with numbers like that, these facilities could continue being disproportionately affected by the virus.

"It's extremely concerning," said Juarez, "because we are going into the winter season and as we know it, this winter season is probably going to be a double whammy. Because we are going to have the flu season probably at a higher percentage rate than in previous years, and COVID is still prevalent or still around."

According to the Dashboard, the rate of COVID-related nursing home deaths and cases were on the rise across the country through October.

Since the pandemic began, almost 2,600 Arizona nursing home residents have died from COVID-19.

Juarez called them "million dollar questions" - why are the rates so low and why is Arizona in last place?

He said healthcare professionals believe it's partly due to "burnout" - people just tired of dealing with COVID.

He added that, no matter where you stand when it comes to vaccines, at least inquire about what nursing-care facilities are doing to keep this vulnerable population safe.

"To ask questions. I think that is very critical," said Juarez. "What is the status of COVID-19 vaccinations in the facility? How is the facility communicating the importance of COVID-19 information? Are they still providing the information to the family members and the residents?"

Juarez said families who are concerned about the answers they get should take action.

According to the Arizona Department of Health Services, nursing home staff and visitors infected with the virus are the most likely sources of introduction into a facility.

November is National Family Caregivers Month, which focuses attention on the unpaid care work of family members.

The care provided by families often is enabled and supported by state-funded wrap-around services.

Over the last few decades, Missouri and other state governments around the nation have funded Home and Community Based Services - or HCBS - as a cheaper alternative to nursing-home care.

The turn towards HCBSs has meant that aging Americans are more often able to stay in their homes.

The kind of support they provide is broad, and includes visiting and live-in nursing care, in addition to other services such as transportation, home repair, and remodeling to ensure accessibility.

Recent state budget cuts to these programs threaten the availability of in-home care. Jay Hardenbrook, advocacy director with AARP Missouri, said funding HCBS sufficiently benefits all involved.

"It winds up saving the state a lot of money," said Hardenbrook. "It makes families stronger, especially if it's an unpaid family caregiver who's doing that, and it keeps that person receiving the services in the place that they want to be."

Hardenbrook said in Missouri alone, unpaid family caregivers are providing more than $8 billion worth of care. He called them an essential part of the system that doesn't get enough attention.

Funding for HCBSs in the state has declined over the last decade, with the nonprofit Missouri Budget Project reporting a 40% cut in community-based programs in 2018.

Last year the General Assembly injected $200 million from the American Rescue Plan into the system as a one-time payment to support care workers' wages.

Hardenbrook said the state needs to fully fund these programs.

"The state decides how much money goes into these programs," said Hardenbrook. "And if we let them stagnate for a long time as we did until last year, then fewer and fewer people will provide those services. Now that we've done this increase, if we can just keep it up, really we'll have a larger workforce and we'll have more people who are able to stay in their homes because they're able to get the services they need."

Hardenbrook said when aging seniors can't get the care services or home repairs they need, the state often ends up paying more for them to live in a nursing home.

He said while some people utilizing HCBS programs are doing so daily, others may only need occasional help.

"One of the things that has been very helpful, especially among our dementia enrollees, is that a family caregiver can get a day off," said Hardenbrook. "One day of respite is what we call it. But really, 'Can I just have a day where I don't have to be a caregiver all day long?' "

The Missouri Budget Project reports that on average HCBS support costs less than one third of institutional care.

It's National Family Caregivers Month, a time of year to underscore the important work these folks do. Family caregivers provide unpaid aid to the loved ones in their lives but often are unrecognized for the crucial role they play in ensuring people are able to age in place.

Lori Stanton, southern regional manager for the Oregon and Southwest Washington chapter of the Alzheimer's Association, said sometimes the people family members are caring for are not able to say thanks, especially if they have Alzheimer's disease or dementia.

"For the Alzheimer's Association in general, we just want caregivers to know that we see them and we appreciate what it is that they're doing," Stanton said.

Stanton says people who know family caregivers should reach out and see what they can do to help that person. There are about 460,000 family caregivers in Oregon providing $5.7-billion of unpaid care, according to a 2017 estimate.

Doctor Vicki Schmall, head of Aging Concerns in West Linn, an organization that educates and trains family caregivers, said these providers are the backbone of the long-term care system.

Schmall notes that one of the biggest challenges for caregivers is taking care of themselves.

"Their health being intact also has implications for the person that they're providing care to, and if their health and well-being goes downhill, that also has implications for the person that they're giving care to," Schmall said.

At some point, family caregivers might have to decide that a care facility is a more suitable place for someone. On December 2, AARP Oregon is hosting an event on how to find the right long-term care facility, which Schmall will be part of.

"We will be looking at different types of facilities in Oregon and we will also be talking about the importance of advanced planning rather than waiting for a crisis to occur, in terms of seeking long-term care," she said.