New America Media - Health

Barred from Federal Programs, DREAMers May Qualify for Medi-Cal

2013-06-17T08:25:00Z

This article is also available in Spanish.

OXNARD, Calif. – For years, DREAMer Rodrigo Perea, 18, lived under a threatening cloud of deportation. Now, Perea has legal permission to live and work in the U.S.-- but until recently he was still in the dark about the low-income health programs he qualifies for.

He’s not alone. Thousands of immigrants, and even many health care advocates in California who work with young immigrants, are unaware that recipients of the Deferred Action for Childhood Arrivals (DACA) program may qualify for state-funded only Medi-Cal, identical in every way to the full scope federal and state funded program that shares the name.

Last August, the Obama administration initiated DACA, giving certain undocumented youth who have grown up in the United States permission to live and work in the country for two-year renewable periods.

Two months later, the administration announced that DACA recipients would not be eligible to receive federal benefits, including health insurance programs -- an obvious attempt on the administration’s part to prove to its foes that DACA would not renege on the administration’s promise that undocumented individuals would not benefit from the Affordable Care Act (ACA).

The announcement enraged immigrant rights activists, who lamented the fact that DACA beneficiaries were being treated no differently than undocumented immigrants when it comes to health care, despite the Department of Homeland Security itself confirming that DACA grantees are lawfully present in the United States.

The administration’s decision effectively denies DACA recipients access to affordable health care because they will not be able to participate in the health care exchanges set up under federal health care reform, will not be covered by the federal and state funded Medicaid (known as Medi-Cal in California), and will not be covered for pre-existing health conditions.

But Perea and others like him are lucky to live in California. It’s one of only a handful of states that run a parallel Medicaid program, solely funded with state dollars. Medi-Cal was launched in 1996, soon after Washington passed the Welfare Reform Act. Under it, Congress banned some lawfully present immigrants from receiving Medicaid indefinitely and slapped a five-year waiting period on newly documented immigrants – both children and adults – before they could sign up for Medicaid.

California was among a number of states with large immigrant populations that disagreed with the ban and opted to continue financing the health insurance program for low-income immigrants regardless of how long they had resided in the United States, provided they met all the eligibility criteria for regular Medi-Cal, said Tanya Broder, a senior attorney with the National Immigration Law Center. The only difference being, the program would be supported exclusively with state dollars.

“California has long recognized the need to provide health insurance to people who are here lawfully because it believes it’s a good idea to invest in preventive care,” said Broder.

Los Angeles DREAMer Hyun Kyu (Kevin) Lee, 21, also a DACA beneficiary and a recent college graduate, unfortunately is a little too old to enroll in Medi-Cal, even though he would like the security of having health insurance. Under current Medi-Cal eligibility requirements, adults over the age of twenty must have a child to qualify.

Since its implementation, United States Citizenship and Immigration Services has received nearly 500,000 DACA applications, of which half have been approved. That number represents only about 30 percent of the estimated 1.76 million DREAMers nationwide who possibly qualify for DACA, according to the Coalition for Humane Immigration Rights of Los Angeles (CHIRLA).

In California, 73,104 youngsters have been given DACA status out of a pool of 134,167 applicants, as of the end of last March.

Perea is currently in possession of an Emergency Medi-Cal card, which has limited use. The card is given to any immigrant who is “not a lawful permanent resident or Permanently Residing in the United States Under Color of Law (PRUCOL).” Aside from emergency medical care and pre-natal care, the cardholder is eligible for organ transplant procedures and renal dialysis services. It will not cover regular outpatient care or pay for prescription drugs.

Until recently, Arcenio Lopez, associate director of the Mixteco/Indigena Community Organizing Project (MICOP) in Oxnard, said he was not aware that DREAMers like Perea, who is his client, might qualify for state-funded low-income health care. Now that he does, he said, he would put the word out through the MICOP promotoras – women from the indigenous migrant community who promote health through educational workshops.

“Many youth here never go to see a doctor or a dentist when they need to, and so many of them have dental problems,” Lopez said. “They need to have physicals and get preventative care… Having access to Medi-Cal will make a big difference to them and their families.”

Blacks Have Highest Rate of Diabetes-Related Deaths in NYC

2013-06-15T08:00:00Z

NEW YORK — Diabetes-related mortality rates have reached an all-time high in New York City, with people of color hit the hardest, according to a report released this week by the New York City Department of Health and Mental Hygiene.

Approximately one person dies of diabetes-related causes every 90 minutes in the city— a mortality rate that has nearly doubled in two decades, from 6 percent in 1990 to 10.8 percent in 2011, says the report.

Of any racial group in the five boroughs — Manhattan, Queens, Brooklyn, Staten Island and the Bronx — blacks have the highest diabetes-related mortality rate, with 116 deaths per 100,000 people, followed by Hispanics (81), whites (45) and Asian and Pacific Islanders at 41, the report added. New York City has a population of more than 8 million, according to the latest U.S. Census data.

In the city’s poor neighborhoods, especially those with immigrant and ethnic communities with incomes below 100 percent of the federal poverty level (in 2013, that is $11,490 for an individual and $23,550 for a family of four) diabetes-related deaths were found to be 2.7 times higher than those in wealthy areas. It was also 1.4 times higher among males than females.

Dr. Thomas Farley, NYC health commissioner, said in a press statement: “[Diabetes] is linked to our epidemic of obesity, and like obesity, it can be prevented.”

Farley noted that the city is launching initiatives, including a radio ad campaign, to educate and encourage New Yorkers to combat diabetes by being active in order to maintain a healthy weight, eating healthy food and cutting out sugary drinks.

The diabetes epidemic — particularly Type 2 or adult-onset diabetes — continues to rise in New York City, according to the city’s health department. Two years ago, nearly 650,000 adult New Yorkers were reported having diabetes.

Under the current U.S. health care system, insurers can legally deny health insurance to people with diabetes or other pre-existing health conditions, or force them to pay higher premiums. And even for those on a basic insurance plan, primary diabetes treatment such as insulin shots is not part of the coverage, leaving patients with exorbitant co-payments and extra costs.

In New York, however, a pre-existing condition health insurance program called the NY Bridge Plan has been available since the 2010 landmark health care reform bill was passed for high-risk individuals. It covers primary and specialty care, in and out-patient hospital care, as well as cost of prescription drugs. The bridge plan will end Jan. 1, 2014 when the Affordable Care Act (ACA) is fully implemented.

However, enrolling in the bridge plan can be long and tedious. Since it is on a first-come, first-served basis, people who apply after the program reaches capacity will be placed on a waiting list. Additionally, an applicant should have had no insurance coverage for at least six months.

Bridge plan enrollees residing in upstate counties have to pay a flat premium of $362 per month, and those residing in downstate counties, which includes New York City, have to pay $421 each month.
“That’s almost not affordable for many working New Yorkers,” said Luisa Santos, 51, a Filipino immigrant from Queens. “That’s more like one-third of an average monthly paycheck.”

But effective Jan. 1, 2014, with the launch of the ACA’s health insurance exchange – an online marketplace for health insurance — insurers can no longer deny coverage or charge higher premiums if a person has a pre-existing condition. This protection has already been in place for children below 19 years old, under the ACA.

Noilyn Abesamis-Mendoza, health policy director of the Coalition for Asian American Children and Families, said that there is a perceived causal relationship between the health benefit exchange and lowering the diabetes-related mortality rate in New York City.

“It is [much more] likely for a diabetic person who has health insurance to get to the doctor than someone who does not have health coverage,” Mendoza said. “Health insurance is a facilitator to connect with the health care system.”

Governor’s Budget Deprives Vital Care to Autistic Kids on Medi-Cal

2013-06-14T23:30:00Z

SAN FRANCISCO – Low-income parents who have children with autism are angry that state lawmakers have passed a budget that will deprive their offspring of vital services to treat their condition.

“Unfortunately, the autism community got left out in the cold,” asserted Kristin Jacobson, president and co-founder of Autism Deserves Equal Coverage.

At least 500 young children on Medi-Cal, the federal and state funded program for low-income children, will no longer get the vital Applied Behavioral Analysis (ABA) services, crucial for autistic children because it improves their socialization and learning ability skills and could even allow some of them to be mainstreamed in schools.

Even as it is, autistic children who had transitioned from the Healthy Families Program (HFP) into Medi-Cal earlier this year because of a budget decision were hurt by the move because Medi-Cal does not provide ABA services, but instead pays for the service through regional centers.

Sadly, nearly two-thirds of former Healthy Families patients could not access those services because of the “stringent criteria” set by the regional centers, noted Karen Fessel, executive director and co-founder of the Autism Health Insurance Project. Those patients lost the ground they had gained, she said.

“It’s been incredibly difficult for the parents,” Jacobson said, noting that one “desperate mother” asked her if she could learn the therapy so she could provide her son care.

Children’s health care advocates had asked lawmakers to set aside $50 million in the budget so regional centers that had been providing those service, could continue doing so.

But lawmakers instead embraced Gov. Jerry Brown’s argument that the state could no longer afford to fund regional centers.

Jacobson said that the governor was being shortsighted in de-funding regional services because every child who receives ABA services could save the state some $1 million over his or her lifetime.

Children who don’t receive the service could end up being institutionalized, she warned.

Living in Fear -- Children of Undocumented Suffer Health Problems

2013-06-14T07:55:00Z

For Alicia Torres, a mother of four in Bellevue, Wash., one of the most difficult aspects of her husband’s undocumented status has been its effect on the health of their 13-year-old son.

Torres’ husband, who is a Mexican national, was detained in 2009 for over a month. He is currently awaiting a deportation hearing, which has been rescheduled several times.

Their son, who was born in the United States, has received special education services since he was very young due to ADHD and anxiety. But since his father was detained, he has started to struggle more in school – a result, Torres says, of his constant worry that he might lose his father.

“When police detained my husband, my son’s anxiety issues started increasing,” she says. Her son started having more behavioral problems at school. He had trouble focusing, following instructions and turning in his homework.

Last week, Human Impact Partners (HIP), a non-profit public health research organization based in Oakland, Calif., released a study showing that in families with one or more undocumented parents, the threat of detention and deportation is harming the mental and physical health of their children, approximately 4.5 million of whom are U.S. citizens.

Many children of undocumented immigrants live with the constant fear that they could be separated from their parents, which the study says can cause severe stress that has long-term developmental consequences.

The study also found that some undocumented parents are afraid to access health care for themselves or their children, for fear of revealing their immigration status and risking deportation. U.S.-born children of undocumented parents are twice as likely as children of citizens to lack insurance or be otherwise unable to access medical care.

“We’re shining a light on health consequences that are rarely discussed in our immigration policy debate,” Lili Farhang, HIP’s co-director, said in a telebriefing last week.

In the past 15 years, more than 600,000 children who are U.S. citizens have experienced the deportation of a parent. HIP estimates that in the past year alone, more than 150,000 U.S.-citizen kids have been affected by deportation.

Dr. Karen Hacker, senior medical director of Public and Community Health at Cambridge Health Alliance, and the executive director of the Institute for Community Health, works with teens who have mixed-status families in the Boston area. She said that the “toxic stress” associated with the deportation of a family member, or the fear of the deportation of a family member, can “disrupt [a child’s] developmental processes,” including brain and organ development, and can cause symptoms consistent with post-traumatic stress disorder.

According to HIP’s report, almost three-fourths of undocumented parents with children under the age of 18 reported that their children experienced symptoms of PTSD, including repetitive thoughts about stressful experiences, avoidance of certain activities, and hyper-alert behavior. Nearly 30 percent of undocumented parents reported that their children were afraid all or most of the time.

HIP also screened the children themselves. Eighty-five percent of the children of undocumented immigrants reported that they had experienced symptoms consistent with PTSD, compared to 57 percent of children whose parents are citizens.

The current Senate immigration reform bill includes some provisions that prioritize family unity and modify current law to make sure that immigration judges are given discretion to consider hardship to citizen or permanent resident children when deciding whether or not to deport a parent.

But many advocates believe that the current bill does not do enough to keep parents and children together. HIP’s report includes recommendations for promoting family-focused reform to a greater extent within the bill, including the elimination of mandatory detention.

Wendy Cervantes, vice president of Immigration and Child Rights Policy at First Focus, a child advocacy organization based in Washington, D.C., points out that though the current bill “offers real promise,” it does not include the elimination of mandatory detention laws, which can result in the arbitrary detention of undocumented parents.

HIP also recommends that the Department of Homeland Security end the 287(g) program and modify the Secure Communities program, both programs that create partnerships between state and local law enforcement and Immigration and Customs Enforcement (ICE). Initiatives like 287(g) can result in the targeting of individuals “who are not the focus of those kinds of laws,” according to Farhang, rather than those who pose a risk to public safety.

Farhang anticipates a “tough battle” ahead in protecting family unity and the health of children of undocumented immigrants, particularly in the House of Representatives, which is anticipated to take a harder line than the Senate in crafting legislation for comprehensive immigration reform.

“This debate can’t just be about getting reform done,” said Cervantes. “It also has to be about getting reform right for children.”

Indian Country’s Data Scandal: Invisibility

2013-06-11T08:30:00Z

The 21st century is a world where data -- bits of information about what we do, what we say, and how we spend money -- has become as important as the story narrative. It’s hard to make any kind of case with a story alone. You need facts to back up your account. You need details. You need numbers.

Right now, of course, big data is a hot story all by itself. The Guardian newspaper broke the story about how the National Security Agency has developed a powerful tool for collecting and analyzing billions of bits of information. The newspaper cited an NSA fact sheet saying this is a tool that “allows users to select a country on a map and view the metadata volume and select details about the collections against that country."

In this map, countries with scant data are green and countries where lots of electronic spying is occurring, such as Iran, are red.

The collection of private communication is a serious issue, one that in a democracy requires a vigorous debate. But the second I saw this map, I was reminded yet again that Indian Country has a different kind of data problem. There is too little reliable, timely information.

If Indian Country were to show up on the NSA’s data heat map we would be the brightest green zone on the planet.

In an era of austerity this lack of data has serious consequences. Quick: What’s the unemployment rate in Indian Country? Has it gone up or down since the sequester? What’s the actual number for furloughs? How about our spending patterns? I could go on and on.

The honest answer to every one of these questions has to be a “don’t know.” A year ago the Bureau of Indian Affairs reported that it would not release a 2010 Indian Population and Labor Force Report because “of methodology inconsistencies.” Donald E. Laverdure, acting Assistant Secretary -- Indian Affairs, wrote July 2, 2012, that the “collected data from those 2010 methods did not adequately meet the standards of quality and reliability that are required of Federal agencies in reporting official statistics.”

In a rare data driven document, the Economic Policy Institute released its picture of American Indian and Alaska Native unemployment finding that the national unemployment rate did jump during the recession from 2007 to the first half of 2010, and increased 7.7 percentage points to 15.2%. That same year EPI reported the “unemployment rate for Alaska Natives jumped 6.3 percentage points to 21.3, the highest regional unemployment rate for American Indians.”

But that was another time. Another recession. Before the sequester. We don’t know what happened after; We only know it’s bad.

The lack of near real time, transparent, data is not just limited to unemployment rates. In a few weeks, for example, more provisions of the Affordable Care Act will begin and will open up more Medicaid funding sources for the Indian health system. So a study about the Medicaid expansion to low-income communities of color would be ideal, right?

The Kaiser Family Foundation’s Commission on Medicaid and the Uninsured used detailed Census data from all 50 states to produce such a report. “While the Medicaid expansion will increase coverage options for all low-income Americans, it will disproportionately impact low-income people of color,” Kaiser said. Indeed the report looked at the impact of Medicaid expansion on Blacks, Hispanics, Asians and Pacific Islanders. But there was not a word about American Indians and Alaska Natives.

But this is not to single out Kaiser (and, a note of disclosure, I was a Kaiser Media Fellow in 2010). My point is you could go down the list, think tank by think tank, and Indian Country’s data invisibility is glaring.

Data invisibility matters because policy decisions are often based on what has been measured (I say often because the premise of austerity itself is contradicted by data, but that’s another story). We need to know what programs work, what’s effective. We need hard information to know how American Indians and Alaska Natives are faring during this decade of austerity.

Mark Trahant is a writer, speaker and Twitter poet. He lives in Fort Hall, Idaho, and is a member of The Shoshone-Bannock Tribes. Join the discussion about austerity. A Facebook page is open at:
https://www.facebook.com/IndianCountryAusterity

Parkinson’s Care Decisions Challenge Latino Families

2013-06-11T08:10:00Z

Part 2. Read Part 1 here.

DENVER, Colo.--One of the biggest challenges families are facing with an aging relative is determining which kind of long-term care is appropriate and realistic for their individual situation. The topic of eldercare can be overwhelmingly complex and difficult for families to navigate, particularly for those ill seniors who are poverty stricken, or members of ethnic minorities.

Latinos tend not to reach out as often as other groups for residential senior care, such as assisted living or home care, observed Cheryl Siefert, executive director of Parkinson Association of the Rockies in a recent presentation.

Misdiagnosis Leads
To Wrong Care

Although Latinos face twice the rate of Parkinson’s disease prevalent among other ethnic groups, patients and health care professionals need to be aware of frequent misdiagnosis.

Other diseases present with symptoms are similar to Parkinson’s, such as Multiple Dystrophy Atrophy. And the wrong diagnosis leads doctors to prescribe the wrong medications, tests and rehabilitation.

Colorado resident María García is the caregiver for her mother, Olga, who was diagnosed with Parkinson’s over three years ago. In early 2012, Olga began displaying advanced symptoms of the diseases, which is not typical in early stages of Parkinson’s. Within months she was physically incapable of caring for herself.

Parkinson’s was a logical diagnosis because Olga had spent years as a farm worker and working in manufacturing warehouses, where she was regularly exposed to pesticides and dangerous metals, such as lead, which are linked to the disease.

Doctors at their neighborhood clinic and her neurologist’s office insisted that Olga’s reaction was likely due to the strength of the Parkinson’s medications and they needed to be patient while doctors adjusted the levels of prescriptions.

After months of “trial and error,” María sought a second opinion. Olga was then diagnosed with a similar condition, multiple dystrophy atrophy. Doctors gave Olga new medications, and her quality of life has improved significantly.

The keys to better care, said María, are doing your own research and learning what questions to ask the doctor: “It can be frustrating and exhausting, but you have to be persistent to make sure you are getting the best care.”

She added, “If you don’t feel comfortable enough with the language and the discussion of medical terms, it’s important that you request to have a translator present at your doctor visits. I have spoken Spanish my entire life, but I don’t know medical terms in Spanish and I didn’t want important information getting lost in the translation. It’s unfortunate, but typically you have to be your own advocate, or advocate on behalf of your loved one.”

--Cristina Frésquez

This cultural barrier to care is unfortunate, she said, but when they do seek professional help, Latinos and other ethnic families are more likely to choose home care as a first option for a loved one.

Non-Medical Care

“When exploring long-term care for Parkinson’s patients it’s good to know that they need non-medical home health care because Parkinson’s deals primarily with cognition and mobility issues. So, people really need more help with things like bathing, dressing and transportation,” Siefert said.

She added, “Exercise, exercise, exercise! I can’t stress that enough! People don’t often think about it, especially if it’s not in their daily routine, but it really does make a world of difference for people with Parkinson’s.”

Also, Siefert said, Hispanic family caregivers family caregivers should consider home modification to make sure that the home is safe by removing physical and dangerous obstacles, such as loose rugs, installing bathroom grab bars and so on.

In addition, she emphasized that families need to understand the complications and limitations that come with Parkinson’s disease, an incurable ailment marked by neurological degeneration over several years.

Siefert advised families they need to consider all options available. They should base a decision on whether to opt for continued family caregiving, hired in-home care, an assisted living facility or nursing home on several factors. Primary among these are physicians’ recommendations, the intensity of needed care, their financial situation, availability of caregivers and the stage of the Parkinson’s.

If family members decide to be caregivers, they should know ahead of time what challenges they may be facing in caring for someone with Parkinson’s.

The severity and frequency of symptoms can vary from day-to-day and from morning to night. For instance, in the morning a person with Parkinson’s can be physically capable of tasks, such as walking and bathing. But by the evening, fatigue often set in—called “sundowning”—causing the person to experience problems simply moving or speaking. In some but not all Parkinson’s cases, a patient may develop dementia.

Families Now Doing High-Tech Care

Symptoms can also fluctuate widely depending on the medications being used and the combination of other health issues present, such as diabetes.

Although family caregiving once required relatively simple loving comfort and attention for an elder, caregivers today discover they are called on to provide increasingly high-tech care, said Susan Reinhard, who directs the AARP Public Policy Institute in Washington, D.C.

“Medical procedures and medicine administration that used to be done by a certified nurse is now being done by a family caregiver - doing things like injections, wound care and monitoring special diets,” explained Reinhard.

Reinhard, lead author of the 2012 study, “Home Alone: Family Caregivers Providing Complex Chronic Care,” said the research revealed that almost half of family caregivers perform complicated medical or nursing tasks, and two-thirds of family caregivers surveyed for the study never sought help from an in-home nurse.

Additionally, Reinhard said, a large proportion of family caregivers receive little or no instruction on how to properly provide medical care for their loved one.

According to AARP, in 2009, there were an estimated 42.1 million family caregivers in the United States, which reveals a great need for caregiver services.

For some people with Parkinson’s who are in early to middle stages of the disease, assisted living may be a viable option, allowing more independence and better access to necessary medical personnel. The National Parkinson’s Foundation (NPF) also has a checklist on its website of things to consider when searching for an assisted living facility. Items range from reviewing the layout of the building and availability of medical staff to food service and monthly costs of living.

Nursing home placement, although it’s the last resort, is sometimes the most necessary decision.

According to the foundation, “You need to ask questions like, ‘How many Parkinson’s patients are there?’ And, ‘How long have you been treating Parkinson’s?’ It’s so important with Parkinson’s patients that their medications are taken on a specific time regimen because with Parkinson’s medications there are no ‘windows’ for these medications to be taken.”

Often in nursing homes, nurses administer medications to patients within a period of certain hours on a shift. But that schedule doesn’t work with Parkinson’s patients, who cannot wait.

Unfortunately, paying for long-term care is often the main determinant in deciding which route many take. Most organizations provide services to help navigate through the confusing maze that is Medicare and Medicaid. Often seniors or their families must pool various financial resources, such as Medicaid for low-income patients, disability insurance, retirement savings and limited private long-term care insurance to cover the costs.

Helpful Resources

The National Alliance for Hispanic Health
Su Familia: The National Hispanic Family Health Helpline
1-866-SU-FAMILIA (1-866-783-2645)
SuFamilia@hispanichealth.org or visit www.hispanichealth.org

National Parkinson Foundation Helpline: (Eng & Sp) 1-800-473-4636 1-800-327-4545 contact@parkinson.org or visit www.parkinson.org

American Parkinson Disease Association
1-800-223-2732
www.apdaparkinson.org

Parkinson Disease Foundation
1(800) 457-6676
www.pdf.org

Eldercare Locator service
Helpline: (Eng & Sp) 800-677-1116
www.eldercare.gov

Cristina Frésquez wrote this article for The Weekly Issue/El Semanario through the MetLife Foundation Journalists in Aging Fellows program, a collaboration of New America Media and the Gerontological Society of America.

Health Care Barriers Hinder Parkinson's Care for Latinos

2013-06-10T09:50:00Z

Part 1. Read Part 2 here.

DENVER, Colo.--Aside from dealing with an illness that has so many unanswered questions, Latino elders suffering from Parkinson’s disease also carry the burden of tackling barriers that hinder their healthcare and treatment.

“My Mom is proficient with her English – when she wants to. But she doesn’t read very well-- she only has an eighth grade education -- so one of us always has to sit in with her on doctor visits and make sure the doctor understands what’s going on with her and so that Mom understands the doctor’s orders,” said West Denver resident Allende, who asked to be identified by last name only because of her immigration status.

Allende, the primary caregiver for her elderly mother, who suffers from Parkinson’s, added, “The fact that she can’t read and understand things like her prescriptions makes it more difficult for all of us.”

Medical Culture Clash

Cultural barriers for Latinos are vaguely acknowledged, if at all, by doctors practicing Western medicine.
Many Latino elders were raised with homeopathic healing methods, Curanderismo, or Santeria, all cultural forms of healing connecting the mind, body and spirit. This different conception of healing often creates a lack of understanding and problems in communicating medical issues and treatment options between doctors and patients.

“Right now, we are struggling with helping my Mom understand that her sickness and bouts of dementia are actually medical issues and unfortunately are not going away. She is convinced that someone has placed a curse on her,” explained Allende.

“To make things worse,” she went on, “some lady told my Mom she could remove the curse for $800. We have even brought her doctor in to help explain, but he wasn’t very helpful -- he just attributed her claims to her dementia and basically wrote off the situation.”

Double Parkinson’s Rate for Latinos

Studies show that among the estimated 1 million people with Parkinson’s in the United States (with about 60,000 new patients diagnosed each year) Latinos and whites have nearly double the rate of developing the condition over Asians and African Americans.

However, because there is still so little known about the cause of Parkinson’s, scientists don’t exactly understand why Latinos have a greater risk of developing this incurable, degenerative disease marked by such symptoms as tremors or shaking, slowed movement, rigid muscles, impaired balance and difficulty speaking.

Parkinson’s was once considered mainly a genetic disorder. But research in recent years has shown environmental factors appear to play a key role for increased risk of developing the ailment.
For instance, the largest Parkinson’s study -- conducted to date--based on data from 36 million Medicare recipients--concluded that genetics play a relatively small role. T

he study by researchers at the Washington University School of Medicine in St. Louis, instead pointed to environmental factors, such as long-term exposure to pesticides, herbicides and farming metals (particularly copper and manganese), which might explain the disproportionate rates of Latinos afflicted with the disease. The study called for further research to confirm these suspicions.

Poverty Complicates Disease

According to UCLA’s Center for Health Policy Research, data from 2009 shows Latino elders age 65 and older rank the highest (29 percent) of those living below 200 percent of the federal poverty level, or about $24,000 a year and struggle to make financial ends meet.

Also, higher poverty levels among Latinos may intensify the impact of Parkinson’s. For example, low income tends to limit access to much-needed healthcare and medications.

Poverty stricken elders also face the risk of malnutrition because they lack healthy food options. Diet can be particularly important for managing Parkinson’s symptoms, as well.

The UCLA Health Policy Research Center, using 2009 data, showed that Latinos ages 65 and older have the lowest level of educational attainment among ethnic minorities in the U.S., with an astonishing 57.9 percent having less than a high school education.

“Studies have shown that people who have lower levels of education struggle more with complex things like financial and health literacy,” stated Steven P. Wallace, associate director of UCLA’s center.

He explained that lower literacy directly affects the capacity of patients and family members to understand such things as even simple medication directions to being able to navigate complex healthcare systems, such as Medicare and Medicaid.

Adding language barriers to the mix impacts elders’ ability to understand such things as how diet and exercise affect on health, and may exacerbate effects of the disease.

Eliminating Health Disparities

The need for cultural competence among health care professionals was emphasized in a 2012 article entitled “Social Justice, Health Disparities, and Culture in the Care of the Elderly,” published in the Journal of Law, Medicine and Ethics., by gerontologists at the University of North Carolina, Chapel Hill.

In the report, Peggye Dilworth-Anderson and colleagues stated, “By understanding a group’s values, belief systems, and ways of thinking and behaving, researchers, care providers, and policymakers can be better equipped to identify the cultural influences that serve as barriers and facilitators to eliminating health disparities.”

Other hurdles Latino elders often must overcome may be geographical barriers, and access to technology. Geographical barriers, such as living in rural areas or living with limited transportation options, often restrict elders’ access to getting adequate medical treatment. This scenario is worsened if their Parkinson’s is creating physical limitations, both making a simple trip to the doctor’s office nearly impossible.

A common hurdle for Latinos is the barrier of being undocumented, which stigmatizes this population into a life of living in the shadows, which is fraught with fear of being deported and detained. This fear keeps people from seeking medical assistance unless it is a life-or-death situation. Combinations of language, immigration status and cultural barriers push Latinos further away from seeking medical advice; understanding proper and affective treatment; and willingness to adhere with medical treatment.

“It’s hard to care for my Mom because we are both undocumented, and she doesn’t qualify for things like Medicare or Medicaid, and going to the doctor regularly isn’t something my family can afford to do,” said Allende.

This article is adapted from a series by Cristina Frésquez for The Weekly Issue/El Semanario written through the MetLife Foundation Journalists in Aging Fellows program, a collaboration of New America Media and the Gerontological Society of America.

Filipino Elders in U.S. Hope to Return Home—With Medicare

2013-06-07T07:10:00Z

Photo: Esther and Tomas Villanueva (seated) are back in their hometown in Milaor, Camarines Sur province of Southern Philippines. They are welcomed here by son Tomas, Jr. and his family.

Part 2. Read Part 1 here.

SEATTLE, Wash.-- While the U.S. Congress deliberates over proposed changes in the nation’s immigration laws, one group of immigrants who became naturalized citizens and who retired and have grown old in this country are seeking a congressional change that is the reverse of what most immigrants want.

Baby boomers, war veterans, widows and retirees originally from the Philippines are hoping welfare assistance and entitlement benefits they have earned would follow them should they decide to return to the land of their birth. Many are World War II veterans who fought under U.S. command and were promised federal compensation only partly provided since then. Advocates believe the United States could save money were it to permit the seniors to return home with their benefits, especially for Medicare.

Understandably, the accessibility of health insurance at this time in their lives is a major consideration as they dream of making their “giant leap” back home. Medicare recipients must be at least 65 or be disabled.

WWII-Era Seniors Assess Their Future

In Seattle’s Filipino-American community, aging WWII veterans and widows meet twice weekly at a senior center where they frequently share meals subsidized through the Older Americans Act. At these gatherings they assess their hopes and future plans.

Veteran Tomas Villanueva, 90, and his wife Esther, 87, have lived in a subsidized senior housing facility in downtown Seattle for the past 21 years.

During World War II, Villanueva served in Guam as a Philippine Scout recruit of the U.S. Army. Following the war, he returned to his home province in Southern Luzon where he served as a constabulary officer. He and Esther decided to emigrate to the U.S. in 1991.

After securing their American citizenship in 1994, the couple filed petitions for some of their six adult children to receive visas enabling them to join their parents in Seattle. The Villanuevas were especially hoping that as they grow old, two of their daughters would provide them a family safety net.

Eventually, the U.S. government approved four visas for the Villanueva children—but they have remained on the waiting list in the Philippines since 1994, because of tight annual numerical immigration quotas the U.S. sets for some countries.

Two of the Villanueva children eventually lost interest in emigrating to the U.S. And the two daughters, still determined to join their parents, learned that worldwide demand for U.S. family visas was so large in 2010 that the demand triggered a retrogression rule, effectively freezing visas and adding several years of wait time to the backlog of applicants.

According to the National Visa Center, the agency that releases visas for all approved applications processed by the U.S. Customs and Immigration Service (CIS), such a rule applies when the number of visa applications exceeds a given threshold. As of June 2013, CIS is processing applications filed as far back as 1992, two years before the Villanuevas petitioned for their daughters. Based on the past experience of petitioners, a delay of five or more years may be likely in this case.

As they waited, the aging couple needed medical attention. Medicare covered Esther’s pacemaker in 2008, and she has elevated blood pressure. Tomas, once active as an officer in Seattle’s Filipino war veterans’ association, has shown symptoms of dementia and oncoming diabetes.

Esther has been debating whether to keep waiting for her daughters to arrive, or to return to the Philippines for good. Keeping her Medicare coverage has been the single, most important factor, she said.

Care Unaffordable in U.S.

“But whether or not Medicare will be accessible to us in the Philippines, there is no other choice but to go back home because we cannot afford caregiver services or retirement home expense in the States,” she explained. Experts say that despite Medicare coverage, uncovered out-of-pocket costs for seniors in the U.S. are now close to 20 percent of their income.

Esther continued, “The long delay of our daughters’ coming has made us decide to go home. We will be nearer to them if we need help.”

An unofficial survey conducted by a coalition of Filipino organizations and community groups across the U.S. shows that about 100 Filipino American professionals retire every day.

While they can take their Social Security retirement benefits and savings anywhere in the world, it is a different story for their Medicare coverage overseas. Until Medicare extends coverage to them outside the U.S., they will need private medical insurance.

Elderly couples in Washington State whose combined income does not exceed $18,000 a year are entitled to a monthly average of $500 in Supplemental Security Income (SSI). Esther and Tomas qualified for SSI and receive a combined monthly supplemental income of $800.

Esther also receives a monthly pension of $100 after retiring as an employee of Volunteers of America. Because Tomas receives a military pension only from his military service with the Philippine Constabulary, equivalent to $120 a month, he is entitled to SSI benefits as a senior residing in Seattle.

If retirees return to the Philippines, they receive 75 percent of their Social Security pension. For Esther it will be a meager $75 per month. If veterans choose to reside in the U.S., they receive burial benefits and each widow receives an average lump sum of $9,000, with the amount partly depending on a departed soldier’s rank.

Medicare Portability

"Filipino-American war veterans and their widows are leading the way in the campaign for Medicare portability. In the 65-and-above age group are 200,000 Filipino elderly in the U.S.," explained Eric Lachica, organizer of U.S. Medicare Philippines, a nonprofit advocacy organization based in Washington, D.C.

Lachica conducts monthly teleconferences among advocates of the movement based in key American cities, from Honolulu to Boston.

A seasoned lobbyist in the U.S., Lachica spearheads the campaign for Medicare portability, an extension that will allow retired Filipino-American immigrant professionals access to their Medicare benefits at internationally accredited hospitals and health care providers in the Philippines.

The campaign by Filipino-American community advocates and elderly leaders for Medicare coverage for retirees wherever they decide to live has been bolstered by a study published in May by the journal Health Affairs.

According to the study, immigrants in recent years contributed about $14 billion more per year to Medicare than they received from the program. As a result, foreign-born U.S. residents produced a $115 billion surplus from 2002-2009, while the rest of the population created a $28 billion deficit over that same period.

The study points out that the aging U.S. population was sucking money from Medicare faster than it could replenish those funds, and immigrants helped cover the shortfall.

South of Seattle, Filipinos in Tacoma who are officers and members of the Filipino-American Physicians of Washington (FAPWA) take a differing view and are skeptical about the proposed Medicare portability.

Change Unlikely, Say Some

Former FAPWA president Nic Panlasigui believes that Medicare “is simply too big an institution that it would take time for Congress and CMS [Centers for Medicare and Medicaid Services] to formulate any significant change.”

Panlasigui, a physician who is also a noncommissioned colonel in the U.S. Army and does work at nearby Fort Lewis, explains his view: “Because U.S. Medicare will demand higher standards of performance, any official extension to so-called Third World countries would entail extensive work. There are concerns about quality of facilities in overseas hospitals, physicians’ credentials, equipment, support functions and the ever-present concern over fraud.”

He continued, “20,000 Filipino doctors and 200,000 Filipino nurses practicing in countless medical centers across the U.S. know the score and we would be the first to wish that such benefits work their way to the native land to help retirees and old folks.”

Following weeks of deliberation and earnest discussions among seniors at the nutrition site about the immigration reform bill pending in the U.S. Congress and Medicare, Esther decided to bring home Tomas.

The old soldier had started to wander about the halls of the housing facility in the wee hours and this has alarmed Esther. After informing her daughters about her decision, she and Tomas flew home on May 21.

Her parting words to friends: “If the immigration reform bill will bring my daughters to the U.S., well and good. But the safety net we need as we age is not certain. Back in the old village, the caring family network I know can always take the place of Medicare.”

Sluggo Rigor wrote this story for the Filipino-American Bulletin through the MetLife Foundation Journalists in Aging Fellows program, a collaboration of New America Media and the Gerontological Society of America.

Long Struggle Ahead for Medicaid Expansion Advocates in Texas

2013-06-04T10:20:00Z

Traducción al español

Health care advocates and business groups, whose efforts failed to move Gov. Rick Perry and the Texas legislature to expand the state’s Medicaid population under the Affordable Care Act, are digging in for a protracted struggle that might extend until 2015 or beyond.

Had Medicaid expansion been enacted during the legislative session that ended last week, individuals earning between 0 and 138 percent of the federal poverty level (an individual earning up to roughly $15,000, or, for a family of four, up to $31,000) would have been eligible for Medicaid health coverage beginning in 2014. The federal government would have paid the entire cost of Texas’s expansion for the first three years through 2016, and 90 percent in years thereafter.

Texas’s Tea Party-driven political leadership shunned an estimated $100 billion over time, money that would have assisted in providing health insurance to an additional one million Texans, according to the state’s Health and Human Service Commission, at a proportionately small cost to the state.

“When the Children’s Health Insurance Program (CHIP) first got approved as a federal program, Texas didn’t take it, but we kept on working and working, and finally they did take it,” said Rev. Vincent Fana, Community Projects Facilitator for Texans Together Education Fund, Inc., a civic and community advocacy organization based in Houston that serves the city and its metropolitan area, where about a third of the state’s 3 million African Americans reside.

“So we need to use our efforts on CHIP as the model, in terms of how to get Medicaid expansion. We need to educate people about what it was the [federal] government was trying to bring in and who opposed it.”

Given that the Texas legislature meets every other year, Medicaid expansion won’t come up again for consideration until 2015, unless public pressure persuades Perry to moderate his position. He could call legislators back to Austin for a special session to consider the issue, as he has already done this year on redistricting. Such sessions are typically used by governors only to promote legislation they support, and Perry’s opposition to Obamacare has been unwavering.

Texas leads the country in the highest rate of those without health insurance – 26 percent out of a total population of 26 million. And of the 6 million residents who are uninsured, 58 percent – or 3.6 million – are Latino, including 1.3 million children under age 18.

Juan Flores, executive director of the San Antonio-based La Fe Policy Research and Education Center, notes that the Latino community has scored some success in reducing the total percentage of uninsured Latino children from 26 percent to 19 percent. He credits the drop to increased enrollment in the state’s CHIP program. Yet, coverage of Latino children still lags behind Whites and African Americans, where the uninsured rates have fallen to 10 percent.

Flores said that Texas has historically moved very slowly on health and human service issues, with low per capita investment compared to other states, a trend he blames for perpetuating a longstanding pattern of marginalizing the state’s Latino community.

Bruce Lesley, President of First Focus, a Washington DC-based research and advocacy organization promoting children and family issues, fears the Texas decision means that many parents will now assume their kids don’t qualify for any federal health care assistance and therefore may be less inclined to seek out services. “Texas doesn’t do a fabulous job on outreach,” the Texas native explained. “There are a large number of kids in Texas who are eligible for assistance but not enrolled.”

Rev. Fana agrees that people need to be pro-active about determining their eligibility. “One aspect of our campaign is to put together a basic outline of all the things that the ACA brings to people even without Medicaid expansion,” he says, ticking off free mammograms, colonoscopies, blood testing, glucose and diabetes testing. “But nobody knows about that down here.”

Fana said advocacy groups will encourage those who qualify for federally subsidized health insurance to enroll in the state’s health insurance exchange, which is scheduled to begin operating Oct. 1 but has yet to be set up by the federal government. (Texas opted not to establish its own exchange.)

Nonprofit advocacy organizations are not alone in clamoring for Medicaid expansion. Eva DeLuna Castro, Senior Budget Analyst at Texas’s Center for Public Policy Priorities, says Medicaid expansion “had enormous support from chambers of commerce, from local, county, and city governments,” which were anxious to avoid increasing property taxes to cover the uncompensated costs of emergency room care for the uninsured. Including charity care, that cost was $5.4 billion in 2011, according to a Texas Hospital Association survey.

Then, too, the decision not to expand Medicaid means that those between 100 percent and 138 percent of the federal poverty level, who are currently uninsured, will now be funneled into the state insurance exchange but at a higher cost to businesses, according to a new report by tax preparation company Jackson Hewitt.

DeLuna Castro explained that without Medicaid coverage, companies that employ more than 50 individuals but do not provide health insurance could face between $299 million and $448 million each year in penalties paid to the federal government just to cover employees who earn between 100 percent and 138 percent of the FPL. They now qualify for sliding-scale premium help in the exchange, but had the state opted for Medicaid expansion, they would have been covered by that and no penalties would be owed.

For Anne Dunkelberg, Associate Director of the Center for Public Policy Priorities, that people above the poverty line will be eligible for sliding-scale taxpayer subsidies while those below the poverty line will now get nothing is one of the gross inequities resulting from the state’s rejection of Medicaid expansion. She and other advocates like Lesley of First Focus believe the issue will resonate with people.

Flores is reserved about Medicaid expansion’s short-term prospects. Like DeLuna Castro and other observers, he noted that hospitals and the medical establishments have teamed with businesses and local jurisdictions to make the case, but he said the political dynamics are now worse than ever.

“The governor, the Speaker of the House, the lieutenant governor, the attorney general, almost a supermajority of legislators in the House and Senate oppose the ACA altogether and certainly oppose Medicaid expansion,” Flores observed.

Dunkelberg, whose organization supported Medicaid expansion, says no one in the health advocacy community is throwing in the towel. “I think it’s going to take continued pressure from the vast majority of Texans who favor Medicaid expansion – a higher level of engagement.”

In a poll conducted for the American Cancer Society earlier this year, 85 percent of the state’s African Americans and 73 percent of its Latinos supported accepting federal money to bring more Texans into Medicaid coverage, as contrasted with 47 percent of its white residents. Overall, 58 percent of Texans favor taking federal money, but that sentiment hasn’t translated into sufficient political power to force the issue.

Rev. Fana, again referring to the advocacy community’s prolonged courtship of the state before CHIP was embraced, understands the relatively sluggish pace of change and the political battles ahead. “Unfortunately, that’s going to have to be the Texas way.”

THE HOME CARE REVOLUTION: Robots and Eldercare’s Future

2013-06-03T08:00:00Z

Photo: Older adults told the Georgia Institute of Technology they’d accept robots performing household chores, but not with their performing personal care, like bathing or dressing. (Courtesy Georgia Institute of Technology)

Part 3. Read Part 1 here and Part 2 here.

SARASOTA, Fla.-- If you are 55 years old, you could wake up 30 years from now to the warm, affectionate voice of your personal care robot, asking what you would like for breakfast and why you slept for only 5.8 hours last night instead of your usual 7.3.

After your mattress takes your morning temperature, pulse and blood pressure readings, you might want to reach for the tablet on your bedside table and tap the touchscreen to turn up your home's heat by a few notches before you throw back the covers. The robot can fetch your slippers.

As you rise and walk into your day, floor sensors might trigger an infrared scan of your gait and balance, relaying the information to a nearby nursing center. If anything seems amiss, a car could be on its way to your home.

I’ve Fallen, But
My Robot Got
Me Up

Home care robotics may offer one answer to the growing number of seniors expected to be living alone in the coming years, according to Marjorie Skubic, director of the Center for Eldercare and Rehabilitation Technology at the University of Missouri.

"We're looking at an assistive robot that could be used in a home setting. It can accomplish fetch tasks, and has an ability to communicate with a user using very natural facial language," she says.

But, she continues, "We're finding that it's not easy for robots to understand imprecise, approximate, ambiguous language. We wanted to explore that, and the fact that older adults use language differently than younger adults. It's brought out some interesting issues."

For instance, Skubic says, a robot may have trouble with the command, "Go get my glasses. I left them on the bedside table." But it can respond to directions, like, "My eyeglasses are on the table, behind the lamp, next to the bed."

At least for now, personal care robots may be less than welcome as stand-ins for human health aides. A study by the Georgia Institute of Technology last year asked older adults if they were willing to use robots in the home for daily tasks. Subjects between the ages of 65 and 93 said they were fine with the idea of robots performing household chores, but were less comfortable with their performing personal care, like bathing or dressing.

And Debra Parker Oliver, a social work professor at the University of Missouri who studies long-term care and end-of-life issues, takes a critical view of the rush to find a technological solution for so many aspects of elder care. She would like to see more research before in-home sensors and robots are considered ready for prime time.

"Businesses have been so focused on developing the gadgets, and not on whether the gadgets are needed," she says. "The question should not even be, 'Does it work?', but 'Do we want it or can we afford it?'"

Oliver believes home care technology should be subjected to more rigorous studies, with emphasis on long-term outcomes and affordability. Instead, she says, grant funders seem dazzled by the potential for supplanting human beings with hardware.

"You may have a motion sensor that detects restlessness in bed, but what does that mean clinically?" she asks. "If it doesn't reduce cost, we've got to question it."

-- Barbara Peters Smith

If not, your environment will continue to gather data for a morning summary sent — with your permission — to the smartphones of your sons or daughters, relaying what you had for your morning meal and whether you took all your medications.

Maximizing Efficiency

Such barely visible technology, many aging specialists believe, is what will allow members of the baby boom generation to navigate old age independently in the privacy of their homes. This will be important, they say, in an era of stretched health care resources and at a time when more older Americans are single than ever before.

"My mother is 89, and my father is 91," says Marjorie Skubic, director of the Center for Eldercare and Rehabilitation Technology at the University of Missouri.

She went on, "They've been married so long that they know each other very well, and it's relatively easy for them to pick up on subtle changes with each other. But there are a lot of people that live alone and they don't have a partner of 65 years. The sensors can pick up on these changes."

The sensors are what Skubic, an engineering professor, has been working on for more than eight years. An in-home network developed in a collaboration of engineers and health care professionals is being tested in elder communities in Columbia, Mo., and Cedar Falls, Iowa.

Changes in the sensor data patterns, Skubic says, have been successful in early detection of health states that can lead to hospitalization — including urinary tract infections, congestive heart failure, pneumonia and post-hospital pain.

The network — which includes an array of devices underneath the mattress and infrared motion detectors on the walls — can tell more about an individual's health than he or she may know.

"We've spent a lot of years looking at this data," Skubic says. "We can identify changes in patterns about 10 days to two weeks before critical health events — often before the elderly resident even notices that there has been a change. And the sensors do a nice job of pulling out the changes associated with depression."

The home care revolution — a national move toward letting frail elders remain in their homes without resorting to residential facilities — is already under way, with more than half of America's direct-care workers engaged in a new form of the old-fashioned house call. But as the very old generation expands over the next three decades, far outnumbering those in the health care workforce, technology that pinpoints when and where help is needed could be key.

Health System Transformation?

Equally important, say aging specialists, is that this new approach to elder care embodies quality standards along with cost efficiencies. The worst outcome would be some huge new health care bureaucracy that imposes tools and services people don't need or want.

"As a doctor, I believe the value of this transformation we're going through that it will actually shed light and raise awareness" of the challenge, says Bruce Chernof, president of the SCAN Foundation, a California nonprofit that promotes aging with dignity and independence.

"I'm not suggesting for a moment that we would medicalize people's homes," he adds. "Is the care accessible, is it affordable and can we judge the quality of it: That, to me, should be the metric. It should be really about what the person is experiencing. And these quality measures need to make sense for those paying for services out of pocket."

How this delivery system is constructed is still a matter for debate. Meanwhile, the federal government and many states are experimenting with approaches that range from a coordinated patchwork of nonprofit community programs, to a single state agency running the system, to a privatized but state-funded operation managed by for-profit companies.

Florida will embark this summer on the third option, contracting with health maintenance organizations to provide care for some 36,000 elderly Medicaid recipients statewide.

Larry Polivka, executive director of the Claude Pepper Center at Florida State University, which studies aging issues, predicts that nursing home use will remain flat — "as we learn more about how to provide services to impaired people at home. But you're always going to need something like that to care for the most impaired, particularly people with dementia."

Nonprofit Network Underused Resource

In 2008 Polivka co-authored a paper in The Gerontologist, arguing for an approach that uses the nation's existing 665 Area Agencies on Aging to coordinate local nonprofits into a coherent home care system.

"The aging network represents an extraordinary, though still underutilized, resource for creating more balanced long-term care systems through the expansion of home- and community-based programs," the authors wrote.

Instead of using for-profit agencies that would pull money from the system, they suggested, the network could "identify and maintain roles for informal caregivers and draw on community resources through donations and the use of volunteers" to keep costs down.

The paper echoed a concern among aging specialists that the home care revolution could give rise to a new industry that professionalizes aspects of home care that have been traditionally covered by family members or volunteers.

The paper’s authors quoted a paper by the 2005 President's Council on Bioethics, warning of a "danger of the complete transformation of caregiving into labor, creating a situation where people's basic physical needs are efficiently provided for by 'workers,' but their deeper human and spiritual needs are largely ignored."

But that doesn't mean Polivka is worried about the dehumanizing potential of personal care robots.

"A lot of people get kind of silly about robots," he says. "They can in fact be of considerable assistance in providing physical aid, and might not be that bad as an emotional companion. People, with their imaginations, can create all kinds of characteristics that we might not believe possible."

Barbara Peters Smith wrote this article for the Sarasota Herald Tribune as a John A. Hartford Foundation Journalist in Aging Fellow, a collaboration of New America Media, MetLife Foundation and the Gerontological Society of America. Copyright © 2013 HeraldTribune.com.

THE HOME CARE REVOLUTION: Finding Skilled Eldercare Workers Not Easy

2013-06-02T08:00:00Z

Photo: Carol Mader, an RN with Youthful Aging Home Health, helps Lucille Barrach adjust her ankle brace at her home in Kobernick House in Sarasota. (Sarasota Herald-Tribune/Dan Wagner)

Part 2. Read Part 1 hereand Part 3 here.

SARASOTA, Fla.— Many families plunge into the mysterious universe of elder home care after a hospital stay — often an unexpected one.

Shortly before it's time to go home, the patient or a relative typically receives a brochure for the hospital's recommended home health agency with a brief discussion of the limited rehabilitation services Medicare will cover.

But the family often does not realize that visiting nurses who replace catheters or therapists who monitor exercises are not much help when it comes to what recently hospitalized elders need most: assistance in bathing, dressing or just moving from bed to chair to bathroom.

Families Unaware of Risks

Families often are unaware that their search for these services could involve crippling costs, expose them to the potential for elder fraud, and immerse them in a fast-growing industry where many workers lack the training and skills needed for safe and reliable caregiving.

Although most Americans — 89 percent in one survey — say they would prefer to age in their own homes, few understand the implications of opening those homes to strangers who can provide the help they need. And surveys show that very few Americans consider the price tag in advance.

Elder Fraud
Protections

As families turn increasingly to home care providers, they need to be cautious consumers, say experts, doing research, asking lots of questions and interviewing at least three applicants.

Along with variable levels of skill, says attorney Ira Weisner, comes a heightened opportunity for elder fraud. Weisner, who has spent 30 years practicing elder law in Sarasota, Fla., sketches a typical scenario in which a trusted, and much-needed, caregiver easily becomes closer to the client than his or her relatives are.

"It can begin very innocently," he says. "The caregiver may say something like: 'Your daughter hasn't called in a long time, has she? It doesn't seem like she cares about you very much. You deserve better.'"

From there, he says, it's a short transition to an interdependent relationship where a caregiver can cross the line into financial or emotional exploitation.

"The thing you're always going to hear" as an attorney, he says, "is, 'All of a sudden I can't get ahold of Mom anymore.' It's always a mucky situation: Was permission given to use the money, the credit card, the car? There are a lot of psychological issues going on."

Family caregivers can be just as open to temptation, Weisner says. But the share of elders who depend on paid assistance is at 35 percent and rising — and the job opportunities in home health for workers with limited educations and little screening compound the possibilities for elder fraud.

Chernof, of the SCAN Foundation, believes a well-designed national home care network will require a new approach that doesn't come naturally in a traditional, top-down medical culture.

"It all comes down to preserving the 'personness' in that health trajectory," he says. "That's how you weed out fraud and abuse; that's how you weed out bad caregivers."

-- Barbara Peters Smith

With baby boomers expected to live longer and be even less capable of covering their own home care expenses than today's elders, state and federal governments are seeking solutions on a grand scale. Rarely publicized pieces of the 2010 Affordable Care Act include Medicare inducements to limit hospital and nursing home stays in favor of home health care. The law also has funded experiments in delivering that care more efficiently.

"I think the base of political support is there for expanding and improving in-home care," says Larry Polivka, executive director of the Claude Pepper Center at Florida State University, which studies issue in aging. He believes we will see "essentially a doubling" of the share of elders who remain at home instead of moving to nursing homes or other facilities.

No one knows what the new system will look like, and many specialists on aging believe the effort to redesign home health care is happening too quickly.

But Bruce Chernof, president of the SCAN Foundation— a California nonprofit that promotes aging with dignity and independence — has a more hopeful view.

He concedes it will not be easy to build a better system, but says anything will be an improvement.

"We already have a radically decentralized system that has no oversight whatsoever," he says. "There are tons of community providers, offering bits and pieces of services. Nobody's looking at the whole person."

Strangers in the House

Even though a new approach to home care is evolving, industry experts advise people to do their homework — and be prepared for sticker shock. Some elders have long-term care insurance that covers home care, but most pay out of pocket or rely — increasingly — on Medicaid, the government health program for low-income Americans.

For the most part, Medicare only covers skilled nursing in the home — not services a family member could perform, like sorting medications or monitoring blood pressure.

"I would say 50 percent or more of the clients who contact our office think Medicare will pay for everything," says Annalise Smith, a regional director for the home health agency SeniorBridge.

While about half of people 85 and over need help with dressing, bathing or meal preparation, she adds, "so many people wait until the crisis occurs before they even think about these things."

The 2012 national average hourly rate for home health aides averaged $21, up 5.3 percent from the year before, according to the MetLife Mature Market Institute.

In Florida the average was $18, ranging from a low of $13 to a high of $25 an hour. But a lot of this money goes to administrative costs — insurance, training, hiring and background checks — and the national average wage for an aide is $9.85.

The Great Recession led to a multiplication of home health businesses that is confusing to consumers, most of whom have never sought such services before.

Just as more Americans lost their jobs, the demand for elder care increased, drawing displaced workers and entrepreneurs into the market.

"There are a ton of them out there, and they're all different," Christensen says. "With the way the economy went, you had real estate agents, guys in construction that lost their jobs and said, 'I'll just become one of these home care companions.' With the style of care that is out there right now, you've got to be really careful about what you're getting and who you're bringing in the home."

Paulina Testerman, an independent home health provider for 20 years in Sarasota, has seen many clients "close their eyes and jump" into a caregiver relationship. The most they usually require, she says, is that she is bonded — insured against loss.

"That really means nothing," she says. "All that does is protect them from $10,000 worth of things I could steal. If you're a good caregiver, you want people to check your references.

"It's about asking family and friends, 'Who did you use?' "

Testerman says the rising demand for home health care has induced more people to obtain certified nurse assistant licenses when they are not suited for the work.

"They take young girls who aren't fit for changing diapers and they're pushing them into it," she says. "These girls can get their CNA overnight. But it's not just about changing a diaper; it's about taking care of somebody who needs more love, not less."

Christensen advises families desperate to arrange safe home care to interview at least three reputable caregivers before picking one.

"I don't go and buy a car at the first place I stop," he says. "You don't open the phone book and pick a dentist. But when you're in the hospital and you don't know an agency, they provide you with theirs. Or your mom's sick, you don't know who to call, and you pick the first one you see. And the first question is always, 'How much is it?'"

Revolving Door

Florida is one of the few states to require certification for home caregivers. A pilot project in six other states, funded by the Affordable Care Act, is testing a training program for personal care aides that would go beyond that minimal start.

"The purpose was to see whether, as a country, we can establish a gold standard for long-term care at home," says Dorie Seavey, director of policy research for the Paraprofessional Healthcare Institute.

Seavy says the results so far are encouraging, because the new training programs are based on what works best for adult learners.

"In the old days, they would put women in a conference room and put a video on and leave the room," she says. "We know now that is not the most effective way for teaching individuals who are doing this work. Most of them have no more than a high school diploma, and for many, English is a second language."

Seavy acknowledges that a better-trained home care workforce may be more expensive. But she believes it's an investment worth making.

"One thing I feel strongly is that better pay and working conditions for these aides could pay for themselves," she says, "reducing turnover and the cost of public subsidies these workers rely on to meet basic needs."

Paying workers more would not only stabilize the workforce, Seavy argues, but also save taxpayers money.

"PHI estimates that about half of all aides live in households that rely on public assistance," she says. "In Wisconsin we crunched the numbers, and found a hidden public subsidy of one to two dollars for every hour of home health work."

Some $6 billion a year is spent on direct care, Seavy says, but that "includes the cost of recruiting and hiring and training replacement workers." Reducing turnover would also improve care, she argues — because having the same caregiver over time leads to better health outcomes for patients.

Nicci Kobritz, owner of Youth Aging home health, says her Sarasota clients value that consistency.

"The issue for us is that they don't want a revolving door," she says. "Particularly with dementia patients, that becomes really important."

Many of her recent hires, Kobritz says, are baby boomers who have experience after caring for their own parents.

"We're seeing a lot of older people who cannot leave the workforce because of economic reasons, and they're coming into home health care," she says. "They're our best workers. They show up, and they don't feign injuries."

Seavy, the economist for the health care institute, says workers who are semi-retired could prove to be a real boon for the home care revolution.

"There are a lot of skills that someone a bit older can bring to the table," she says. "It takes a lot of maturity and experience to go into someone's home — even getting there and showing up on time, and having the patience to navigate the family situation."

Barbara Peters Smith wrote this article for the Sarasota Herald Tribune as a John A. Hartford Foundation Journalist in Aging Fellow, a collaboration of New America Media, MetLife Foundation and the Gerontological Society of America. Copyright © 2013 HeraldTribune.com — All rights reserved. Restricted use only.

Black Group Asks FDA to Snuff Out Menthol Cigarettes

2013-05-31T18:00:00Z

Today is "World No Tobacco Day," and the African American Tobacco Control Leadership Council is using the day to urge the Food and Drug Administration to ban menthol in tobacco products, arguing that menthol masks the harsh taste of tobacco, encouraging more African Americans to smoke and to smoke more.

The council, which is based in Oakland, Calif., also urged supporters to sign a 42-page online petition, calling for a ban on menthol, which was presented in April to the FDA.

"This is the most important health issue of our time," Carol McGruder, co-chair of the council, said during a news conference on Thursday. "Menthol covers up the harsh taste of tobacco, giving the cigarette a pleasant taste."

Because of its taste, menthol is known as a starter ingredient that enhances the popularity of cigarettes, especially among young and beginner smokers. The Centers for Disease Control and Prevention reported that 19.4 percent of the black population smoke, and 82.6 percent of them smoke menthol cigarettes.

People who smoke menthol cigarettes can inhale the smoke longer, which may explain the high rates of lung cancer deaths, according to the research study, "Demographics of Smoking."

Lung cancer is the leading cause of cancer deaths among both African-American men and African-American women, according to the American Cancer Society.

In 2009, the FDA banned specific flavorings in cigarettes including strawberry, grape, orange, cinnamon, vanilla and coffee as part of the Family Smoking Prevention and Tobacco Control Act, but menthol escaped banishment in the United States. Brazil banned menthol cigarettes, using U.S. data, McGruder said.

Dr. Phillip S. Gardiner, the co-chair's council, said cigarette manufacturers have targeted African Americans with predatory marketing. This includes placing more signs in the black community advertising brands of menthol cigarettes. The signs are also larger in the black community, and they are positioned close to schools, Gardiner said. In addition, cigarette manufacturers sell their products at a lower price in the black community.

"In the white community, a person can buy one pack of cigarettes and get one pack free," he said. "In the black community, a person can buy one pack and get two packs free."

In a 2002 research paper, “The African Americanization of menthol cigarette use in the United States," Gardiner wrote that the cigarette industry has successfully promoted among African Americans the belief that menthol cigarettes are safer than regular cigarettes. The companies also donated money to civil-rights organizations, which encouraged the groups to support their brands. The leading menthol brands are Newport, Marlboro Menthol and Benson and Hedges.

"Menthol cigarettes are a growth area for the cigarette industry," Gardiner said. "People aren't smoking a pack a day like they used to, but the proportion of menthol-cigarette smoking is increasing."

World No Tobacco Day, which is organized by the World Health Organization, highlights the risks associated with tobacco use and advocates for effective policies to reduce tobacco consumption.

The day is observed each year on May 31.

The African American Tobacco Control Leadership Council can be found on the web at SavingBlackLives.org.

THE HOME CARE REVOLUTION: Eldercare at the Crossroads

2013-05-31T07:20:00Z

Photo: Chuck Schockweiler pours a liquid lunch into a feeding tube for his wife, Rosalie. They’ve helped each other survive the debilitating effects of terminal illness. (Herald-Tribune/Elaine Litherland)

Part 1. Read Part 2 here and Part 3 here.

SARASOTA, Fla.— Chuck and Rosalie Schockweiler need no words as they execute a smoothly choreographed routine in their Englewood home.

He rinses her feeding tube and hands it to her; she shakes it dry and attaches it to a port on her abdomen as he dissolves three pills in water. Chuck fetches her liquid lunch as Rosalie places a plastic receptacle in an ingenious homemade stand that Chuck fashioned from PVC pipe and an old battery charger, weighted “with imported stones from the front yard.”

He pours in the solution, and as she feels it flow into her belly, she smiles — the same glorious, sunny smile he first noticed back when they worked at Venice Regional Medical Center, in Venice, Fla. He chases the meds with a can of liquid nutrition Rosalie must have five times daily, filling the tube and responding to her prompt when it’s time for another pour.

Usually, as Rosalie finishes her meal, Chuck gets himself something to eat and they sit together at the dining table. Then they stand, every single time, for a long, satisfying hug.

It’s a process they repeat about every two and a half hours, with two more feeding sessions for medication alone.

Early in the day, it looks easy. But, Chuck admits, evenings are tougher because his energy flags.
The Schockweilers have been married for 14 years. At 66, she has lived for a year and a half with amyotrophic lateral sclerosis, an incurable erosion of the central nervous system that’s also known as ALS, or Lou Gehrig’s disease. And at 71, he has endured countless rounds of chemotherapy for liver cancer.

Rosalie took care of Chuck when his chemo side effects were most debilitating. Now, he says, it’s his turn.

“We both have a terminal illness,” he says. “Whoever lives longer, be that as it may. I don’t know; it will work out. We’re just hanging in there.”

The Schockweilers, like many older couples with health challenges, are determined to stay out of a facility and in their own home as long as they can. But what sets them apart from many retired Floridians — aside from their determination to keep laughing, joking and visiting the occasional tiki bar — is the tight network of people willing and able to help.

Rosalie’s good friend comes by often to take over feedings so Chuck can run errands or work on his boat. A neighbor cuts their grass. Daughters, sisters and church members stand by, along with a close-knit community of fishing buddies, retired police officers and firefighters.

This is the traditional American model of home health care, and it is rapidly fading away.

A New Workforce

Americans are living longer, meaning more health support is required for an extended time. But fewer people have access to the loving, full-time live-in care that Rosalie Schockweiler gets from her husband. Baby boomers have higher rates of divorce and childlessness than their parents — raising the prospect that there will be fewer family members to care for them.

Long-term care specialists agree that helping elders with care in their own homes could be more cost-effective than institutionalization — and it is what most older Americans prefer. But no one seems to know how the home care alternative would work on a larger scale.

A home care revolution — with extended stays at facilities, such as hospitals and nursing homes, diminishing — could be daunting, personally and financially, for many working people who struggle to care for aging parents. It would mean an enormous — and enormously bureaucratic — step beyond asking the nice lady down the street to look in on Mom while you’re at work.

Private-duty aides and home care agencies are expanding nationwide to pick up the slack from what has been a loosely organized, almost spontaneous approach to eldercare by family and friends.

Government-funded programs are scrambling to design networks that make use of this workforce, with the goal of paying less than nursing homes or assisted living facilities would charge.

The rise of for-profit health care providers is no accident; 78 million U.S. boomers are poised to become consumers of these services. Already, some 45 percent of Americans over 65 live alone.

Last year the Franchise Business Review named home health care one of the top five most lucrative franchises in the nation, with net profits averaging 12 percent to 15 percent.

The industry is a major source of new jobs, with an estimated 54 percent of the nation’s 4 million direct care workers employed in home and community settings. By 2018, this share is expected to rise to 66 percent.

But the rush to capitalize on this market could offset a crucial element that has made aging at home a less costly option than nursing and assisted living: a force of more than 66 million unpaid caregivers who do their demanding jobs out of love or obligation alone.

In the move to professionalize a largely informal — sometimes desperately improvised — process, eldercare specialists say, some important questions aren’t being raised.

“What do we want to put in place? Do we want high-quality, person-centered care? Do we really want to make a difference to overburdened family caregivers?” asks Dorie Seavey, director of policy research for the Paraprofessional Healthcare Institute. “Or do we want women quitting their jobs because we have such a poor infrastructure to support their efforts to help their loved ones?”

Larry Polivka, executive director of the Claude Pepper Center at Florida State University, which studies issues in aging, is skeptical about an emerging effort to enlist health maintenance organizations — as Florida is doing — in the business of elder care without more evidence about what works.

“I’m not saying for-profit HMOs can’t do the job,” Polivka says. “But we need to have in place more comparative models so we can contrast and compare and decide what’s best. Instead we’re just rushing pell-mell in one direction or another, depending on which way the wind blows — ignoring the fact that this is going to be one of the hugest issues over the next three decades.”

But Bruce Chernof, president of the SCAN Foundation — a California-based nonprofit that promotes aging with dignity and independence — believes the home care revolution can result in a better quality of life for the next generation of elders.

“The challenge is to not medicalize the entirety of someone’s life,” he says. “How do we build a new system that interacts with the medical system but allows people to have the functionality that they want, as opposed to being framed as a hospital patient?”

Steep Challenges

The federal government is lined up solidly behind this goal, funding an array of experiments in diverting frail or cognitively impaired elders from traditional end-of-life care at nursing facilities, and trying to make it possible for them to survive with assistance at home.

“All Americans — including people with disabilities and seniors — should be able to live at home with the supports they need, participating in communities that value their contributions — rather than in nursing homes or other institutions,” Health and Human Services Secretary Kathleen Sebelius said last year.

But it is a long way from “should” to “can.” The cobbled-together care plans that families devise to handle a health crisis — subsidized heavily with their own labor — may not translate easily to government-funded systems operated by an array of for-profit service providers.

The challenges are steep:

• Aside from promising pilot projects, few states have shown real progress in setting up viable, large-scale home care networks that offer quality care and realize tangible savings.

• The dollars available for elder care won’t just be stretched thin as the baby boomers age. The total amount of funding available is almost sure to be sliced as the “Greatest Generation” leaves the stage and numerous boomers begin to draw on their entitlements.

• Professionals in the home care field predict that families will continue to bear a larger share of the burden — in dollars where possible and in hands-on availability where needed.

For unpaid caregivers, quitting or scaling back their jobs can seem like an expedient, less costly way of making sure they meet their family obligations. But they should think long and hard before taking such a drastic step, according to research by the MetLife Mature Market Institute.

An institute study of more than 1,000 family caregivers over the age of 50 found that the lifetime effect of lost wages, Social Security benefits and retirement savings comes to more than $300,000 for the average caregiver.

In trying to make sure a parent or spouse is safe and comfortable, says MetLife Institute research director John Migliaccio, it can be easy to make a decision that may prove devastating financially. About 25 percent of all adult children in the United States are responsible for the wellbeing of an older relative, he says, and the cost of their dropping out of the workforce came to $3 trillion in 2008 dollars.

“That’s a significant economic impact that goes unrecorded,” he adds. “Potentially, the costs are much higher.”

Meanwhile, little attention has been paid to the growing medical sophistication of what family caregivers are being asked to do, says Susan Reinhard, vice president for public policy at AARP.

According to the organization’s 2012 report, “Home Alone: Family Caregivers Providing Complex Chronic Care,” these unpaid friends and relatives are doing the work not of personal aides, but of highly trained health care providers.

“More than half of them are giving five or more medications, and more than 25 percent are giving 10 or more injections,” Reinhard says. “About 35 percent of them are doing wound care, sterile dressings, colostomy care. These are things that make nursing students tremble the first time they do it. And here we’re saying, ‘Go home and do this to your mom.’ ”

Priceless Care

It would be hard to calculate the value of care provided in homes like the Schockweilers’.
Rosalie’s voice is nearly gone; she relies on her expressive face, lively hand gestures, pen and paper and an iPad to make her point.

“I believe God put us in each other’s life for a reason. We take care of each other, and our weakness makes us strong,” she writes on lined yellow paper. “We don’t understand how people cannot believe in God. It is amazing how I can help myself, and all the things I still do.”

Rosalie, an ex-New Yorker, and Chuck, a retired police officer from Chicago, plan to carry on, Chuck says, “as long as possible. I tell my buddies, ‘When I go, I want to check out in my La-Z-Boy chair.’ ”
He wants them to strap him in, put the chair on his boat and light it all on fire, “like a Viking,” out in the Gulf of Mexico.

He and Rosalie laugh, clearly more comfortable talking about the hereafter than the here and now.
“Once they tell you you have a terminal illness and you adjust to that, it’s easier to deal,” Chuck says. “You can kind of joke about it.”

Barbara Peters Smith wrote this article for the Sarasota Herald Tribune as a John A. Hartford Foundation Journalist in Aging Fellow, a collaboration of New America Media, MetLife Foundation and the Gerontological Society of America. Copyright © 2013 HeraldTribune.com.

Brown’s Budget Pokes Holes in Safety Net, Say Health Care Advocates

2013-05-29T20:05:00Z

OAKLAND, Calif. – With just about two weeks left for Gov. Jerry Brown to unveil the state budget, Alameda County officials and health care advocates are scrambling to get him to reconsider his threat to reduce funding to counties that provide care for their indigent populations.

“The Governor’s budget proposal greatly jeopardizes what we are trying to provide” for the county’s most vulnerable populations, asserted Wright Lassiter III, Alameda Health System’s chief executive officer, at a press conference here earlier Tuesday in front of one of Alameda County’s widest health care safety nets: Highland Hospital.

The conference was intended to shine a spotlight on what speaker after speaker called “dangerous cuts” proposed by Brown in his revised May budget, and keep the pressure on him to not include those proposals in the final budget.

The Assembly Appropriations Committee is in the midst of reviewing Brown’s revised budget. Lawmakers are expected to vote on the finalized budget by the middle of June.

While health care advocates are lauding many of the provisions in the revised budget, particularly one that promises to expand, with enhanced support from the state, Medi-Cal, the federal-state funded health care insurance for low-income people, they are worried that he is making a mistake by proposing to reduce money to counties to care for their indigent.

For starters, said Alex Briscoe, director of the Alameda County Health Care Services Agency, Brown wants to redirect $300 million from the counties to the state this fiscal year, under the “false assumption” that Obamacare will cover all of the state’s uninsured when it is fully implemented on Jan. 1, 2014, either through Medi-Cal expansion or Covered California, the state’s federally subsidized online insurance exchange.

The cuts are only going to get deeper. In fiscal 2015, Brown wants to lessen about $900 million in funding to the counties, and about $1.3 billion in the third year.

“County health programs are the only safety net for the hundreds of people who will be un-enrolled,” Briscoe warned.

Of the 3 to 4 million Californians projected by UCLA and UC Berkeley who will be left out of any form of health coverage next year—either because they are undocumented, do not qualify for Medi-Cal, miss the enrollment period, or who simply cannot afford to purchase insurance on the exchange—some 100,000 of them reside in Alameda County, noted County Supervisor Wilma Chan, who is in the forefront of the campaign to keep Brown from carrying out the county cuts.

If he did, she asserted, “It would be a penny wise and pound foolish decision.”

Briscoe pointed out that since 1991, Alameda County has had robust indigent health care programs, probably more than any other county in the state. The governor’s proposal, he said, “would strip the county of providing that care.” The result will be that more people will turn to emergency rooms for their primary health care.

Even as it is, the state does not provide Alameda County “anywhere near” what it costs to run its health care services—about $75 million a year, Lassiter said.

 

Wal-Mart Smacked With $110 Million in Fines for Environmental Crimes

2013-05-29T18:49:50Z

Mega-retail company Wal-Mart plead guilty on Tuesday for Clean Water Act violations that involved years of illegally and improperly handling hazardous liquids and pesticides in California and Missouri. The company is on the hook for $81.6 million in criminal environmental fines for violating federal laws and another $30 million to resolve state environmental law violations.

Documents from the U.S. District Court in San Francisco say that “from a date unknown until January 2006, Wal-Mart did not have a program in place and failed to train its employees on proper hazardous waste management and disposal practices at the store level. As a result, hazardous wastes were either discarded improperly at the store level - including being put into municipal trash bins or, if a liquid, poured into the local sewer system - or they were improperly transported without proper safety documentation to one of six product return centers located throughout the United States.”

In Missouri, Wal-Mart employees improperly handled pesticides that customers had returned. “Truckloads of hazardous products, including more than 2 million pounds of pesticides, were improperly handled under Wal-Mart’s contract,” said Tammy Dickinson, U.S. Attorney for Western District of Missouri. Read more here.