Speaking at a Committee for a Responsible Federal Budget event yesterday on public attitudes toward fixing Social Security, I discussed a new Voice of the People survey showing that strong majorities of both parties favor addressing the program’s long-term shortfall mostly by raising revenues.
For years, California has used a limited number of categories to map out health trends among Asian ethnic groups. People of Taiwanese descent may have been folded into the Chinese demographic group in identifying death, disease and pregnancy rates. Fijian people were lumped into the category of “other Asian.”
But thanks to a new law, the California Department of Public Health will add categories so that people of many more ancestries, such as Bangladeshi or Hmong, can self-report their ethnic group more specifically and accurately. The categories do not factor in immigration status, and involve descendants of Asian immigrants as well as new arrivals to the country.
The new law was signed in September by Gov. Jerry Brown after a 10-year effort by health advocates.
“We’re extremely excited,” said Kimberly Chen, government affairs manager for the California Pan-Ethnic Health Network, a sponsor of the bill. “In the past, we’ve seen how [such specificity] has been really helpful in driving policy changes.”
California’s public health officials already collect demographic data on various Asian groups when tracking genetic and communicable diseases, the incidence of childhood lead poisoning, and when people are born and pass away.Use Our Content This story can be republished for free (details).
Data on Chinese, Japanese, Filipino, Korean, Vietnamese, Asian Indian, Laotian, Cambodian, Hawaiian, Guamanian and Samoan people are already in the state public health system.
But soon, officials will add 10 new categories involving a population of about a half a million people, according to the measure’s proponents. New data will specify whether someone is Bangladeshi, Hmong, Indonesian, Malaysian, Pakistani, Sri Lankan, Taiwanese or Thai, or if they are from the Pacific Islands of Fiji or Tonga.
Proponents of the new law said that continuing to lump many Asian groups into one “other Asian” category limits the state’s ability to provide the best health care to this population and could lead to greater health care costs. Chen of CPEHN says the perception that “Asian women don’t get breast cancer” was broken a few decades ago when data was parsed out more finely about various Asian communities. Researchers saw, for example, that Native Hawaiian women had much higher rates of breast cancer than Korean women. “With that information, they were able to drive more research, and outreach and funding to really address that disparity,” Chen said.
More specific demographic information could identify mental health and post-traumatic stress disorders in Asian refugee communities, Chen said. The data also could be used to assess teen pregnancy rates among different ethnic communities and inform policy and programs for communities most vulnerable to commercial sexual exploitation and childhood lead exposure.
Better data also could help advocates understand how Hmong and Cambodian communities, which have high rates of diabetes, each are benefiting from prevention programs, Chen said.
Some Chinese American groups had been opposed the measure, and one Bay Area group, the Silicon Valley Chinese Association (SVCA), protested it at the State Capitol in August. The measure’s opponents said the bill was unfair because it targeted Asians and not other demographic groups. In a letter to the bill’s author, Assemblymember Rob Bonta (D-Oakland), SVCA said government has used ethnic data to discriminate against immigrants in the past. It cited as examples the Chinese American Exclusion Act of 1882 and the relocation of Japanese Americans during World War II.
“There is no guarantee that data collected by this bill won’t be used to discriminate against the very people it is intended to protect,” reads the letter from Weiping Li, the association’s president.
Supporters of the new law say they advocated to make sure no identifiable data is released that could lead to discrimination. Indeed, the law states that the Department of Public Health shall make the data available to the public but may not disclose any “personal identifying information.”
In recent months, health aides who care for elderly Americans at home appeared at scores of rallies calling for better pay and workplace conditions. President Barack Obama and some of the presidential candidates have pledged to improve the lives of these workers, who often struggle on the poverty-level wages they are paid.
Now, thanks to the “Fight for $15” movement hundreds of thousands of home care workers in at least five states will gradually receive significant hourly raises. And as result of a large organizing campaign, tens of thousands who have joined unions can negotiate for paid sick time, health and retirement benefits.
“The Fight for $15 and the simultaneous benefits is an amazing, unprecedented thing that I don’t think anyone five years ago would have expected, given our hyper-polarized political environment,” said Laura Dresser, a labor economist at the University of Wisconsin-Madison who studies the impact of low wages. “This is a workforce that’s coming out of the shadows.”
People with a deep understanding of eldercare policy say that without improving conditions and raising pay, which hovers at $10 an hour, it will be impossible to meet skyrocketing demand for skilled and devoted workers.
But they also argue that bigger paychecks and benefits will not have a significant impact on senior citizens unless their aides and assistants are also better screened, trained and organized.This KHN story also ran in USA Today. It can be republished for free (details).
“I think it’s going to take time and a different mindset to professionalize this job and improve outcomes,” said Carol Rodat, New York policy director for the Paraprofessional Healthcare Institute (PHI), which researches ways to transform eldercare. “Achieving better wages is a first step, but there are others that have to follow or you don’t get to the end point — improved outcomes for the clients.”
As it stands, the soaring number of Americans who choose home care over nursing homes have no organized national system to count on that guides the hiring, education or oversight of their caregivers. There is little or no data that tracks how well the home care is delivered. And yet, these workers, like those in a hospital, provide a lifeline, not only dressing, feeding, bathing and shopping for clients, but working with their health care providers and noticing when their illnesses progress or relapse.
“It’s been a growth industry people can get into with little to no experience and few barriers,” said Rodat, whose organization wants better state and federal oversight. “We have to totally re-engineer home care. It will take a massive change.”
In the past 20 years, the Service Employees International Union, which organized nurses, has focused on home care workers, a largely non-white, female workforce that earns as little as $8 an hour and is often unable to piece together a full day’s work. And earlier this year, these workers landed in the national spotlight when they joined the “Fight for $15” minimum wage campaign.
As a result, 500,000 home caregivers in 12 states have joined SEIU and can bargain for paid sick time and retirement benefits. And Massachusetts, California, New York, Washington and Oregon, and cities such as San Francisco, Seattle, Los Angeles, New York and Washington D.C., passed laws phasing in a $15 minimum wage or an equivalent indexed to inflation. An estimated 640,000 of the more than 2 million aides hired through agencies or hired privately will see raises.
Also, starting this year the federal Fair Labor Standards Act guarantees them minimum wage and overtime.
The raises and union protections are concentrated in Northeastern and Western states. And they do not even cover the largest share of workers, the unpaid family members who care for a loved one. Nonetheless, many people who have worked closely on these issues see the changes as an important step in stabilizing what has been a marginal workforce.
With an annual turnover of around 50 percent, home care workers now have among the lowest retention of any industry. Labor organizers say even those who wish to stay often leave for better pay and hours. Advocates note that a trusted caregiver can be pivotal to a person’s health and well-being.
“When you keep the same worker that individual is going to see changes in the client’s quality of life. They are more likely to say ‘Mrs. Smith usually doesn’t confuse her children,’” said Caitlin Connolly, the Home Care Fair Pay campaign coordinator with the National Employment Law Project.
But many people who work in eldercare or study it also say that paying workers more and keeping them on the job will not assure senior citizens a standard of care because of the large gaps in regulation. Currently, not all home care agencies even check applicants’ criminal histories, something not every state requires.
In a widely-cited study, researchers at Northwestern University’s medical school found that just 55 percent of the 180 agencies conducted a national background check. Only a third tested applicants for drug use, even though the job can mean frequent contact with medications.
The study, led by geriatrician Lee Lindquist, showed that many agencies hire unskilled workers off Craigslist and place them in homes of elderly people with physical and cognitive impairments.
Lindquist found aides, some of them illiterate, who mixed up medications or neglected to feed or move clients. Supervisors rarely checked in. And training was lax.
Federal law requires home health aides, who perform skilled nursing functions such as wound care, to have 75 hours of training. There is no mandated training for the largest, fastest-growing segment, the personal aides who assist with housekeeping and grooming. No continuing education is required.
“We see a huge prevalence of Alzheimer’s and dementia and depression and pulmonary disease and cardiac disease,” noted Rodat of PHI. “You’d think we’d want to give people extra training since they are on the front line.”
The increased training she and others are calling for costs more than many agencies and states say they can afford.
Still, some home care agencies say they provide training well beyond minimum standards to meet their customers needs.
Home Care Associates, in Philadelphia provides up to 150 hours of training, along with continuing education and coaching from experienced supervisors.
“A lot of people who do this work have a real passion for it,” said Karen Kulp, president and CEO of the company. “But even if they get $15 an hour it’s not going to be any different without training, support and supervision. You’re not going to improve the quality of the work.”
KHN’s coverage related to aging & improving care of older adults is supported by The John A. Hartford Foundation and coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation.
On the final day of June 2015, Colin LePage rode waves of hope and despair. It started when LePage found his 30-year-old son, Chris, at home after an apparent overdose. Paramedics rushed Chris by helicopter to one of Boston’s flagship medical centers.
Doctors revived Chris’s heart, but struggled to stabilize his temperature and blood pressure. At some point, a doctor or nurse mentioned to LePage that his son had agreed to be an organ donor.
“There was no urgency or, ‘Hey, you need to do this.’ I could see genuine concern and sadness,” LePage said, his voice quavering.
The next morning, after another round of tests showed no signs of brain activity, LePage said goodbye to the son who’d been revived but wasn’t fully alive.
“I sat in a chair with him and held his hand,” LePage said. “It wasn’t clinical. It didn’t feel like someone’s gaining something here. I knew that someone was, and that’s comforting that someone else has been able to have a little piece of my son and some of their pain is not what it used to be.”
Chris’s liver is now working in the body of a 62-year-old pastor. His case is one among the nearly nine-fold increase so far in donations from drug users across New England since 2010. So far this year, more than one in four, or 27 percent, of donations in New England are from people who died after a drug overdose. Nationally, that rate is 12 percent for the same time period.
“It’s remarkable and it’s also tragic,” said Alexandra Glazier, president and CEO of the New England Organ Bank. “We see this tragedy of the opioid epidemic as having an unexpected life-saving legacy.”
That legacy is much more dramatic in New England than across the U.S. as a whole, where organ donations from drug users are up from 341 in 2010 to 790 through Aug. 31 of this year.
It’s not clear why. Overdose death rates are high in New England, but not the highest in the country. Glazier said the 12 transplant centers in that region may be more aggressive about finding a match for patients with failing hearts, livers or kidneys. And she said New Englanders tend to be pragmatic about end-of-life decisions.
Some hospitals in Massachusetts report that they are performing a record number of transplants. At Lahey Hospital and Medical Center in Burlington, the number of patients receiving a liver transplant has roughly doubled in the past three to four years.
Hospitals are required to test organs and warn patients if there is a risk of contracting HIV or hepatitis B or C, which are more common in IV drug users. That risk may be less troubling for patients these days because there are drugs to treat these viruses if patients become infected.
Some patients in need of organs still hesitate at the idea of accepting a liver or kidney donated by a drug user. But not at Lahey, where Dr. Mohamed Akoad chairs the department of transplantation.
“Most of these patients trust the fact that these donors are tested and they understand that their chance of dying while waiting for an organ is high,” he said.
Akoad said Lahey has not had any cases of HIV or hepatitis B or C transmission in recent years.
That’s the case at Mass General in Boston as well. Dr. Jay Fishman, associate director of the hospital’s transplant center, said an organ from someone who used drugs is not necessarily risky and may even be healthier than other options.
“You have to remember that as awful as this outbreak is, these are younger people who are dying, often with needles in their arms, and many of them were first-time drug users,” Fishman said. “They weren’t all addicts.”
Despite the increase in available organs, there’s no sign that the supply is keeping up with the demand from aging Americans and those with chronic diseases.
“The number of people on the waiting list is increasing faster than the number of donors, even with the increases related to overdoses,” said Dr. David Klassen, chief medical officer at the United Network for Organ Sharing, which tracks and manages organ donations in the U.S.
There are likely many more organs available from the victims of drug overdoses than those collected. Some patients addicted to heroin or other opioids don’t carry a driver’s license, haven’t spoken to a family member about their end-of-life wishes, or aren’t in touch with family members who could give consent to donate an organ.
“I’ve never heard anyone talk about organ donation as a possibility. I’m not sure it’s on their radar screen,” said Dr. Jessie Gaeta, chief medical officer at the Boston Health Care for the Homeless Program.
Gaeta said she isn’t sure how she would suggest organ donation, even to her high-risk patients.
“It’s really nihilistic to say that to someone in their early 20s,” Gaeta said. “I have so much hope for my patients, yet if someone does die and there’s a chance for their organs to be helpful, that’s one good thing to come of a death like that.”
For many mothers and fathers, sisters and brothers who’ve lost someone to an overdose, organ donation is a nearly taboo topic. It can trigger feelings of guilt, anger and despair, even among people who participate.
Debbie Deagle sat next to her son Stephen’s unresponsive body for six days before agreeing to turn off his respirator.
“Before they took him,” Deagle said, weeping, “I had my head on his heart, just so I could hear that beat, and they had to peel me off.”
More than a year later, Deagle is still haunted by questions: Should she have asked for another opinion about the scans of Stephen’s brain?
“Never in a million years do you ever visualize kissing your child whose heart’s beating and having to watch them wheel that stretcher away and know they’re going to cut him open and take out a beating heart,” Deagle said.
The transplant patient who received Stephen’s heart did not make it, leaving Deagle with the feeling her son had died again. She’s written to the patients who received Stephen’s liver and kidneys, but has not heard anything back yet.
SNAP spending fell for the third straight year in fiscal year 2016, new Treasury Department data show. This shows that SNAP (formerly food stamps) is working as designed: it expanded during the recession and its aftermath to meet increased need, and has fallen as the economy has improved.
This is the next in our “Medicaid Works” blog series, which aims to inform the debate over Medicaid’s future by providing the latest facts and figures on this essential and popular part of the nation’s health care system.