DES MOINES, Iowa - The main focus of the Iowa Legislature in its remaining weeks is to craft the state budget. While most of the discussion is about dollars, one issue also gets to the heart of what many Iowa families are going through: caring for an aging loved one.

Anthony Carroll, state director for advocacy at AARP Iowa, said that requires some policy decisions to provide proper support for family caregivers.

"When you look at family caregivers, they are right now the backbone of health care, of long-term care, providing over two-thirds of the long-term care," he said. "How can we improve the quality, the comfort level, to provide the care they are already providing?"

AARP Iowa, the Alzheimer's Association and Older Iowans Legislature were among the groups calling for action at the Statehouse this week. According to AARP Iowa, nearly two-thirds of family caregivers assist their loved ones with complex tasks, but only half have the instruction or training to provide that care.

An effort to enact the CARE Act - Caregiver Advise, Record and Enable - failed this session. It would have helped families when loved ones are discharged from a hospital, and already is the law in more than a dozen states. But Carroll said the CARE Act's intent still could be incorporated into legislation.

"We're asking that our state insist that all adults, when you enter a hospital, have the option to designate and involve a family caregiver," he said. "And those family caregivers can go home with some assurance, some instruction and demonstration of the medical tasks that they need to perform."

Currently, he said, that in-hospital training happens only half the time. However, some hospitals say they already provide training if needed and don't want an additional requirement.

It's estimated that family caregivers provide care worth almost $4 billion in Iowa each year, which Carroll said makes more training and support for them vital.

"We specifically asked for our state leaders to include legislation aimed at improving the lives of Iowa's family caregivers as part of any health policy, any health budget discussions," he said.

Legislative leaders anticipate determining budget numbers within the next 10 days as they aim toward adjournment before April 19.

The CARE Act was House Study Bill 564 in 2016; it's online at legiscan.com. In 2015, it was Senate File 465, online at legis.iowa.gov.


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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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