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.

Advocates for unpaid family caregivers in Maine say they'll need continued support beyond the recently passed paid family and medical leave program.

Caregiving can be a full-time job with many out-of-pocket expenses, like paying for gas to get to a doctor's appointment or ensuring a parent has enough food in their fridge.

Bridget Quinn, associate state director for advocacy and outreach with AARP Maine, said state grants to help caregivers with up to $5,000 in expenses will end next year, and lawmakers need to start considering ways to ensure that help continues.

As Quinn put it, "That is basically having a 24-7 job for a lot people that they never get a break from, so there is a significant amount of caregiver stress and burden."

An AARP report finds unpaid caregivers in Maine provide nearly $3 billion in economic benefits, with women providing the bulk of that work.

Beginning in 2026, eligible workers will have 12 weeks of paid time off available to them for family or medical reasons. Employers and employees will split a 1% payroll tax to fund the program.

Quinn suggested the Maine Legislature could also create unique tax credits for caregivers, to help cover expenses and increase the availability of services that allow families to remain in their homes as they age.

"Especially for those in kind-of far out reaches of Maine," Quinn added, "who really need the support sooner than later, because they are dealing with a situation where they have few options already."

She noted it took years of grassroots advocacy to win a paid family and medical leave program, and encouraged caregivers to reach out to legislators to ensure more gains.

Many older residents of Washington state are facing strains on their budgets -- and the government programs that could assist them are underused. An assistance program like the Senior Property Tax Exemption is a prime example.

King County Assessor John Wilson cited the median value for a home in his county as about $790,000. If someone qualifies for a full exemption, Wilson estimates they would save almost $5,000 a year.

"$5,000 a year savings in property taxes is nothing to to be trifled with," said Wilson, "but the shame of it is, a lot of folks don't know that program even exists."

The Washington Legislature has expanded the Senior Property Tax Exemption program by increasing the economic threshold, he added. In 2024, his office estimates as many as 30,000 more people will apply for the program.

Other programs can also help. The state's charity care law directs hospitals to provide financial assistance to low-income patients. The Affordable Connectivity Program helps people get a discount on their broadband internet service.

And bigger federal programs, like the Supplemental Nutrition Assistance Program (SNAP), provide crucial assistance, but only about 64% of eligible older Washingtonians use it.

Wilson is convinced there's an unnecessary stigma surrounding assistance.

"I know from talking to seniors, what you hear sometimes is, 'Well, yeah, but I just feel kind of awkward asking for it,'" he recounted. "Or they feel like it is some kind of tacit admission that, 'I've failed somehow.'"

Wilson believes government at various levels needs do a better job of raising awareness for these programs, too.

"There are so many economic pressures that are weighing on people now," he noted, "and there is a safety net out there, but we don't do always a really good job of showing people, 'Here's how you can access it -- and here, by the way, are the various things you're eligible for.'"

Online tools can also help people find the programs they're eligible for, such as Benefitscheckup.org from the National Council on Aging.



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As of Jan. 1, insulin will become a lot more affordable for many Nebraskans, and those who have come to rely on telehealth visits are more likely to be able to continue receiving care this way.

The state senators who helped bring about these changes have received 2023 AARP "Champion Awards."

Sen. Eliot Bostar, D-Lincoln, was named a "Champion for Prescription Drug Affordability." His bill led to an out-of-pocket price cap of $35 for Tier 1 insulin.

Jina Ragland, associate state director of advocacy and outreach for AARP Nebraska, said it could make a big difference for people, some of whom might not have been able to take their medications as prescribed.

"They're rationing medications because they can't afford them, and they're trying to pay for groceries or utility bills or whatever," Ragland observed. "Which, for diabetes and insulin-dependent individuals, can be deadly."

Sen. Tom Brewer, R-Gordon, received a "Champion for Family Caregivers" award for his legislation to help ensure access to telehealth services. It requires insurance companies to pay in-state providers at least as much for telehealth visits as for in-person visits.

Ragland pointed out telehealth can make a huge difference, especially for those in rural parts of the state. She noted the telehealth option can spare some Nebraskans many hours of driving to appointments.

"How many people have a loved one that's an older parent that may have to take off a full day of work to drive from rural Nebraska," Ragland stressed. "Either into Grand Island, Lincoln, Omaha - or if they're going the other way, even into Denver or parts of Wyoming?"

Ragland expects telehealth will continue to grow in popularity, and believes it will help with the workforce shortage at Nebraska's rural clinics and hospitals.

"As people become more and more comfortable and have the connectivity, they're able to utilize this service," Ragland emphasized. "I think even for the provider side, it saves a lot of time for them, also, in meeting the needs of more people, I think, in a more time-efficient and effective model."

She added telehealth can contribute greatly to a person's ability to remain as independent as possible while "aging in place."