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.
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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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The nation's largest advocacy group for people age 50 and older is investing more than $4.2 million, including more than $75,000 in Colorado, to help make communities more livable for people of all ages.
AARP Colorado Associate State Director Marissa Volpe said the city of Fort Collins won a $20,000 AARP grant to host a series of hands-on workshops, in both English and Spanish, to make it easier for low-income residents to remain in their homes as they get older.
"This is going to focus on plumbing 101, water conservation for mobile homes and senior apartments," said Volpe. "And the event aims to really build do-it-yourself skills, reduce maintenance costs and support aging in place."
AARP's Livable Communities initiative has invested more than $24 million in some 1,700 projects since 2017, including 40 in Colorado.
The program funds innovative projects meant to inspire change in public spaces, housing, transportation and more.
This year marks AARP's most substantial investment in rural communities to date, with 45% of grants going to these areas.
The grassroots group Commún was awarded more than $18,000 to develop an emergency disaster plan for the Loretto Heights Resilience Hub in Southwest Denver.
Volpe said this community-driven effort will help empower local navigators, known as promotoras, to deliver disaster preparedness and other critical information to older residents.
"It's the idea to capacitate those on the ground," said Volpe, "the folks you might see at church on Sunday, the folks you might see in the supermarket - with the necessary information."
Bike Durango won a grant of more than $12,000 to install a temporary bike lane on Junction Creek Road.
Volpe said the lane will promote a safer environment for walking and cycling, and help people access multiple municipal amenities.
"Expanding pedestrian safety, walkability, and bikeability in communities," said Volpe. "This is a big point of making communities livable and reducing car traffic."
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