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.

More people are providing care at home for aging family members or those with disabilities - and a new study says they face mounting financial and emotional challenges in the process.

The report from AARP and the National Alliance for Caregiving finds more than 63 million Americans are now family caregivers, an increase of 20 million from 10 years ago. Nearly half of those surveyed face major financial hardships such as debt, lost income or food insecurity.

Bandana Shrestha, AARP Oregon's state director, said the work is getting more complex, adding to the stress.

"People are living with many chronic diseases, which may mean that people are managing multiple medications, they may have other medical demands on them," she said, "and a lot of this is being taken care of by family caregivers."

Oregon's 470,000 family caregivers, whom Shrestha calls the "backbone of the state's long-term care system," receive better support than most states. She cited policies such as paid family leave and programs such as Oregon Project Independence, which provides limited in-home services.

Alma Valencia is part of the "sandwich generation," caring for both her children and her aging mother with dementia. Valencia said she left a fashion career and its financial stability to care for her mother full time - and thinks one of the hardest parts is the isolation and stress.

"Caregiving isn't just a personal matter; it's a national issue," she said. "We need paid leave. We need financial relief. We need training. We need time to breathe."

Shrestha noted that on top of reducing paid work hours, family caregivers spend about $7,200 yearly on medical expenses. She said this is an area where lawmakers could help.

"They are forgoing a retirement savings, Social Security," she said, "so we have to do something in terms of offsetting those things."

She said AARP is supporting a bill in Congress focused on providing a tax credit for family caregivers, called the "Credit for Caring Act," which has more than 50 bipartisan co-sponsors.

More seniors in Washington state are facing financial strain or even losing their homes and seven local organizations will expand support for them with help from new grants.

Funds from AARP Washington's Community Challenge grants support quick projects to create more age-friendly communities.

Lauren McGowan, executive director of Local Initiatives Support Corporation Puget Sound, one of the grant recipients, said the $15,000 will help seniors get property tax relief, for which many do not realize they qualify, or need help in applying.

"We want to make sure that families have access to those resources so that they can stay in their homes, age in their homes healthy and well, and then pass along their homes to the next generation," McGowan outlined.

The group expects to help more than 5,000 low- and moderate-income older adults in King, Snohomish and Pierce counties. McGowan noted the average household can save thousands of dollars a year if they qualify for property tax relief.

Marcelo Pratesi, development director for Habitat for Humanity in Whatcom County, another grant recipient, said they will use the money to help 10 low-income homeowners over age 50 with repairs they cannot afford or manage. The project will enhance accessibility, health and safety, enabling them to age in place.

Pratesi added in North Whatcom County, the need is high.

"They don't have anywhere else to go to," Pratesi pointed out. "For us to be able to walk in there and build a wheelchair ramp or put in grab bars, or make bathrooms more accessible in general, it's going to be really great."

The Community Challenge Grants awarded more than $63,000 for projects across Washington state this year, part of AARP's national community investment, which has awarded more than $4 million to hundreds of organizations.


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A former Wisconsin mayor said the new federal budget will only worsen the current aging crisis families like hers have already been facing.

Analysis from the Congressional Budget Office suggests President Trump's budget bill will trigger automatic cuts to Medicare due to an expected increase in the national deficit.

Judy Karofsky, a former mayor of Middleton, said it would affect hospice services and end-of-life programs already in need of greater funding. She explained when her mother was 99, the local hospice agency determined she was not dying soon enough and abruptly discontinued her services. She explained how it also triggered her eviction from the assisted living facility where she was at the time.

"This happens in this country," Karofsky emphasized. "My mother was 99-and-a-half when that was decided. We were on our own for a matter of months. She did die within the next six months, just before she turned 100. It was cruel!"

Karofsky stressed cuts to Medicare would rob many of the most vulnerable Americans, like her mother, of their right to a dignified death.

Hospice provides patients and families with pain relief, medical equipment, nursing care and spiritual support. Studies show hospice saves Medicare and families money by reducing overall health care spending. Karofsky said without it, families are faced with financial burdens few can bear.

"I thought before I was involved with my mom's hospice care, that hospice was a charity," Karofsky noted. "I understand now that every hour of help, every service, every product that's brought to a hospice recipient is reimbursed through Medicare and every hospice agency is beholden to Medicare."

The number of Americans aged 65 and older is expected to more than double over the next 40 years.

Karofsky argued the issue of underregulated assisted living facilities will worsen the current aging crisis across the country. In her book, "DisElderly Conduct, The Flawed Business of Assisted Living and Hospice," Karofsky recounted her mother's negative experience at six assisted living facilities in Wisconsin and called for action to address the ongoing crisis.


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