About 790,000 Hoosiers are family caregivers for relatives in declining physical or mental health. But Indiana ranks fairly low in support for family caregivers on the latest AARP national scorecard
for Long-Term Care Services and Supports. It's 39th compared to other states.

As Indiana transitions away from reliance on nursing-home care into more home and community-based services, families play an even bigger role.

Marvell Adams Jr., CEO of the online resource 'CaregiverAction.org, said support is improving. He said 30 years ago, a caregiver's duties were not clearly defined, and support was nearly nonexistent.

"The organization really was started out of the notion that caregivers really did need to have a voice in order for their role not only to be more effective, but also they could be understood and respected as a vital part of an individual's treatment plan," Adams said.

Adams added family caregivers need to safeguard their own health in order to provide the most effective care. He also advises frequent communication with physicians and keeping medical and legal documents organized and easily accessible. According to AARP, family members in Indiana provide unpaid care worth more than $10 million a year.

For many families, caregiving doesn't even happen in the same household. The National Institute on Aging defines a long-distance caregiver as one who lives an hour or more away from the person being cared for, often by a local relative. Adams suggested coming up with strategies to pitch in remotely.

"Long-distance caregivers are going to want and need information; they're going to want and need insight. Being able to plan out visits in advance -- perhaps the caregiver
that is local can plan for that, whether it's for their own respite or for checking in with doctor's visits, but being able to set that up ahead of time," Adams said.

The NIA says long-distance caregivers can also help with preparing a living will or researching long-term care choices.

According to the site healthinaging.org,' of the 34 million Americans who care for older family members, roughly 15% do so long-distance.

By Jackie Fortiér for KFF Health News.
Broadcast version by Suzanne Potter for California News Service reporting for the KFF Health News-Public News Service Collaboration

When pediatrician Eric Ball opened a refrigerator full of childhood vaccines, all the expected shots were there — DTaP, polio, pneumococcal vaccine — except one.

“This is where we usually store our covid vaccines, but we don’t have any right now because they all expired at the end of last year and we had to dispose of them,” said Ball, who is part of a pediatric practice in Orange County, California.

“We thought demand would be way higher than it was.”

Pediatricians across the country are pre-ordering the updated and reformulated covid-19 vaccine for the fall and winter respiratory virus season, but some doctors said they’re struggling to predict whether parents will be interested. Providers like Ball don’t want to waste money ordering doses that won’t be used, but they need enough on hand to vaccinate vulnerable children.

The Centers for Disease Control and Prevention recommends that anyone 6 months or older get the updated covid vaccination, but in the 2023-24 vaccination season only about 15% of eligible children in the U.S. got a shot.

Ball said it was difficult to let vaccines go to waste last year. It was the first time the federal government was no longer picking up the tab for the shots, and providers had to pay upfront for the vaccines. Parents would often skip the covid shot, which can have a very short shelf life compared with other vaccines.

“Watching it sitting on our shelves expiring every 30 days, that’s like throwing away $150 repeatedly every day, multiple times a month,” Ball said.

This year, Ball slashed his fall vaccine order to the bare minimum to avoid another costly mistake.

“We took the number of flu vaccines that we order, and then we ordered 5% of that in covid vaccines,” Ball said. “It’s a guess.”

That small vaccine order cost more than $63,000, he said.

Pharmacists, pharmacy interns, and techs are allowed to give covid vaccines only to children age 3 and up, meaning babies and toddlers would need to visit a doctor’s office for inoculation.

It’s difficult to predict how parents will feel about the shots this fall, said Chicago pediatrician Scott Goldstein. Unlike other vaccinations, covid shots aren’t required for kids to attend school, and parental interest seems to wane with each new formulation, he said. For a physician-owned practice such as Goldstein’s, the upfront cost of the vaccine can be a gamble.

“The cost of vaccines, that’s far and away our biggest expense. But it’s also the most important thing we do, you could argue, is vaccinating kids,” Goldstein said.

Insurance doesn’t necessarily cover vaccine storage accidents, which can put the practice at risk of financial ruin.

“We’ve had things happen like a refrigerator gets unplugged. And then we’re all of a sudden out $80,000 overnight,” Goldstein said.

South Carolina pediatrician Deborah Greenhouse said she would order more covid vaccines for older children if the pharmaceutical companies that she buys from had a more forgiving return policy.

“Pfizer is creating that situation. If you’re only going to let us return 30%, we’re not going to buy much,” she said. “We can’t.”

Greenhouse owns her practice, so the remaining 70% of leftover shots would come out of her pocket.

Vaccine maker Pfizer will take back all unused covid shots for young children, but only 30% of doses for people 12 and older.

Pfizer said in an Aug. 20 emailed statement, “The return policy was instituted as we recognize both the importance and the complexity of pediatric vaccination and wanted to ensure that pediatric offices did not have hurdles to providing vaccine to their young patients.”

Pfizer’s return policy is similar to policies from other drugmakers for pediatric flu vaccines, also recommended during the fall season. Physicians who are worried about unwanted covid vaccines expiring on the shelves said flu shots cost them about $20 per dose, while covid shots cost around $150 per dose.

“We run on a very thin margin. If we get stuck holding a ton of vaccine that we cannot return, we can’t absorb that kind of cost,” Greenhouse said.

Vaccine maker Moderna will accept covid vaccine returns, but the amount depends on the individual contract with a provider. Novavax will accept the return of only unopened vaccines and doesn’t specify the amount they’ll accept.

Greenhouse wants to vaccinate as many children as possible but said she can’t afford to stock shots with a short shelf life. Once she runs out of the doses she’s ordered, Greenhouse said, she plans to tell families to go to a pharmacy to get older children vaccinated. If pediatricians around the country are making the same calculations, doses for very small children could be harder to find at doctors’ offices.

“Frankly, it’s not an ideal situation, but it’s what we have to do to stay in business,” she said.

Ball, the California pediatrician, worries that parents’ limited interest has caused pediatricians to minimize their vaccine orders, in turn making the newest covid shots difficult to find once they become available.

“I think there’s just a misperception that it’s less of a big deal to get covid, but I’m still sending babies to the hospital with covid,” Ball said. “We’re still seeing kids with long covid. This is with us forever.”


Jackie Fortiér wrote this story for KFF Health News.


get more stories like this via email

A program in Georgetown, in Williamson County, is working to improve health outcomes for low-income residents by helping them gain access to community and social services.

Community Health Connect works with food banks, social service and health care providers to assist clients with beneficial wraparound services.

Dorothy Light, Community Health Connect director at the United Way for Greater Austin, said the program started almost two years ago.

"The first thing we did was launch what's called the Pathway Community Hub," Light recounted. "It allows us to build a network of community health workers. We're starting with pregnant and postpartum moms."

Light emphasized they hope to eventually expand services to include residents with chronic health conditions or chronic social needs. The program is one of six community sites across the state, funded by the Episcopal Health Foundation, finding local solutions to address nonmedical drivers of health inequity.

The community health workers are the eyes and ears of the HUB and report back valuable information. Light was surprised to learn a majority of the 100 postpartum moms they are working with are food insecure. She noted most of their clients are afraid to take advantage of help from food pantries or other nonprofits.

"They heard from their neighbor that the guy down the street went and got turned away, so they're not even going to try," Light explained. "Or some of our families that have emigrated from other countries are really fearful to use any type of social support."

Light added they recently completed the county's first community needs assessment focusing on food access in Williamson County.


get more stories like this via email

Some emergency medical services, or EMS, are consolidating or closing across Wyoming, while the need for services is increasing. In 2021, Wyoming EMS agencies received about 89,000 calls for service, that's a roughly 27% increase in five years. The law doesn't require EMS services be funded in a community, but a recent AARP survey shows many people think communities should chip in funding.

Tom Lacock, associate state director for communications and state advocacy with AARP Wyoming, said 16 EMS providers have folded or consolidated over the last decade.

"And when you tell folks that you know, EMS is not an essential service, it's not required to be there, they kind of do a double take. " he explained.

73% of Wyomingites think that communities should fund EMS in the same way as police and fire departments, according to the survey. A 2022 Wyoming Department of Health report shows roughly half of EMS nationwide are delivered through fire departments. Others come via a combination of municipal and county governments, private providers and hospital systems.

After listening sessions, the department's potential recommendations for supporting emergency medical services include creating EMS districts, designating EMS as an essential service, regionalization, education and licensing requirements. Lacock says what he calls the "patchwork" of funding could be strengthened, too.

"The question becomes - what can we do to make perhaps a mix of funding? - Not only to pay for this, you know, as Wyomingites, but also to capture some revenue from folks who come through the state?" he said.

The state doesn't currently contribute to EMS funding. Recent attempts to get grant money and American Rescue Plan funding approved by state legislators and Gov. Mark Gordon both failed.