Homecare Workers Flood #fightfor15 Rallies,
Wait for President Obama to Act

Home care workers organized by 1199/SEIU march in midtown Manhattan on April 15, 2015.

Home care workers organized by 1199/SEIU march in midtown Manhattan on April 15, 2015.

Homecare and direct care workers were out in droves last night in New York’s #fightfor15 rally that stretched from Columbus Circle to Times Square. Initially billed as an event for fast-food and retail workers, the #fightfor15 day expanded to home care workers, adjunct professors, and low-wage workers in general. In fact, health and home care workers lined up for blocks to participate in this demonstration. So far, home care workers have won the right to unionize in several states. This will clearly be a linchpin in moving this issue forward.

1199/Service Employees International Union (SEIU) led organizing for yesterday’s rally in New York and elsewhere. Ai-jen Poo, Director of the National Domestic Workers Alliance and Co-Director of Caring Across Generations, has been out front on in calling for radically altering the long-term-care infrastructure. In her new book, The Age of Dignity: Preparing for the Elder Boom in a Changing America, she proposes integrating access to care and affordability of care, aligning the interests of the workers, the families that they care for, and the quality of care the workers provide. At the heart of Poo’s work is the recognition that home care and domestic workers are not valued and treated with dignity. Elders don’t fare much better.

Looking at her book and other data, it becomes abundantly clear the nation’s 2-3 million home care workers live in poverty. Home care workers are overwhelmingly women, immigrants, and people of color. The health care industry does not value these workers and the workforce is often transient. According to the National Employment Law Project, in 2013, the average income of home care workers was $18,598. Is it any wonder that quality of care is an issue in elder and long-term care?

Are quality improvement proponents targeting the wrong metrics: would they do better to ensure that workers have a living wage and -fair working conditions before they check whether the elderly suffer from bedsores, get infections, or sustain falls? Are they supervised properly, available in sufficient numbers, or is the industry cutting corners?

Yet despite a mantra in health policy circles to tout value-based care, health care leaders and the medical press have proved somewhat inattentive to these pressing issues, which if addressed, would ratchet up worker quality of life, reduce burnout and workforce transiency, and enhance quality of care for patients.

It would be refreshing for health care leaders and the families to back a decent living wage for homecare and direct care workers.

But many Americans may not realize that ever since the Fair Labor Standards Act went into effect in 1938, home care and direct care workers were excluded from basic minimum wage and overtime protection. As Poo points out, this exemption stemmed from racism in the 1930s, when African-Americans provided much of the nation’s domestic work. Southern legislators refused to sign off on the Fair Labor Standards Act, unless farmworkers, domestic workers, and homecare workers were excluded from labor protective legislation. It needs to be changed.

Finally, in September 2013, the fight seemed to be over, when the Department of Labor issued its Home Care Final Rule that extended these protections to the nation’s 2-million home and personal care workers The law was slated to go into effect in January 2015. However, District of Columbia Judge Richard Leon vacated the ruling in Home Care Association of America vs. Weil. The Department of Labor has filed an appeal and action is expected sometime this summer.

Advocates for enhanced worker protections for homecare and direct care workers are hoping that the Obama administration will push this forward shortly. When President Obama ran for election, he promised prompt action on this. Hillary Clinton offered this comment on twitter last night: “Every American deserves a fair shot at success. Fast food & child care workers shouldn’t have to march in streets for living wages. –H.” Clearly advocates for home care workers will want to hear a heck of a lot more before they see Hillary or any other candidate on their side.

7 Disruptive Ways to Celebrate Mothers’ Day

It’s about time that we looked at Mothers Day expansively and rocked the boat. Lots of positive vibes could be set in motion. Some of my thoughts:

1.     Press for action and donate to organizations devoted to preventing unnecessary maternal deaths around the world and in the United States.

 Every Mother Counts is worthy of your donation, as are numerous other organizations, including Samahope, WeActx, the International Planned Parenthood Foundation, Partners in Health, and undoubtedly many more. India and Nigeria account for more than one-third of the world’s reported maternal deaths, but maternal deaths are far too high in many countries and are rising in the United States.

Expedited training of skilled birth attendants, access to emergency obstetrical care, ultrasound, promotion of prenatal care, and access to safe abortion are urgently needed. According to the World Health Organizations, the major complications that account for 80% of all maternal deaths are:severe bleeding (mostly bleeding after childbirth); infections (usually after childbirth); high blood pressure during pregnancy (pre-eclampsia and eclampsia); and unsafe abortion.

In the United States, maternal death rates are rising. Efforts to lower maternal deaths need to be comprehensive and target risk factors and environmental barriers to care. State differences, shown here, are striking. Disparities by race and class are also important. In the United States, since 2011, the Maternal Health Accountability Act of 2011 has been floating around Washington. It would establish accountability, fight maternal health disparities, and combat severe maternal complications. Ask your representative to co-sponsor the bill and get it through.

2.     Buy a copy of Trans Bodies, Trans Selves for your mom or a friend’s mom.

This book, compared to the landmark Our Bodies, Ourselves, looks like it could radically inform and transform views on transgender people. I have seen excerpts and I am very impressed. The Washington Post review is extremely positive. Let’s not let transgender equality lag behind. Think outside of the box: don’t forget that trans moms are out there.

3. Press your elected officials for a national long-term care policy for our moms and dads.

Please, don’t turn the page here. The safety net is failing our aging moms—and dads for that matter—and yes the population is getting older. Think about it: are you going to be able to support your parents? Will they be able to support themselves? (I won’t bore you with the obvious here.) We need a comprehensive, national long term care policy.

Older Women’s League National Mothers Day Report 2014, released Friday, points out:

“The American public still lacks understanding about long-term care; where it occurs, how to plan for it, and why comprehensive, thoughtful, and rational long-term care policy is of importance to all Americans.” 

The Report can help you get up to speed on how we could create and sustain a long-term care system that permits Americans to remain financially solvent, independent, and with a decent quality of life.

4.     Move beyond thinking about mother’s day with a narrow compass. Single moms, lesbian, gay, and transgender moms, and moms with HIV, are just some of the groups overlooked in traditional mother’s day celebrations. Shake up the usual mother’s day celebrations by including them.

 5.     Donate or volunteer to stop restrictions to abortion access in the United States and around the world. Every pregnant woman cannot go through a pregnancy.

A recent article by @irincarmon addressed the end of abortion access in the South. Of course, we know that this is far from the only restriction out there. Consider donating to abortion access projects. Here are some ideas: the National Network of Abortion Funds  A few others that you might want to consider are listed here: Texas , North Carolina, and in Kansas, the SouthWinds Women’s Center, where George Tiller worked.

Globally, access to safe abortion –all too often– does not exist. I addressed the outrageous roadblocks that Beatriz faced in El Salvador last year in getting access to abortion. Her story is emblematic of countries that have been firmly opposed to abortion as a basic human right. Donate to the groups linked to above, which can save women’s lives.

6.     Keep the pressure up to #bringbackour girls every day.

Take the pressure to your elected officials, to twitter, to Facebook. Stay informed. I wish I had a solution that would bring these girls back. If you have ideas, please put them in the comments.

7.     Make a yearlong commitment to the fight for equity and women’s health by volunteering in campaigns or donating what you can afford. Many organizations are happy to get donations as small as $5 a month.

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Hope that you take time to comment below!

 …and now for a moment of shameless self promotion! There’s been a hiatus on PatientPOV. Writing about ways to disrupt healthcare, end inequality, and build social change is my first love, but I cannot afford to do work like this without $ support. Contact me @lauranewmanny for paid writing opportunities or support this blog with a Paypal donation above.

 

10 Ways Healthcare Reform Might Help People with Disabilities

Healthcare reform discussions frequently center on the changes anticipated for the general population. But people with disabilities — about 56 million in the United States — are generally left out of the healthcare reform picture.

That absence is not unusual. According to Lisa Iezzoni, MD, Professor of Medicine and Director of the Institute for Health Policy at Harvard Medical School, discrimination against people with disabilities stretches back thousands of years in human history. They “have been discriminated against, stigmatized, institutionalized, and hidden behind closed doors,” she says. The disability rights movement, which began in the 1970s with deinstitutionalization, made progress through the passing of the Americans with Disabilities Act in 1990. Now, says Iezzoni, new health reform measures will offer people with disabilities important additional protections.

Healthcare reform has a variety of names, including the Affordable Care Act (ACA), the Patient Protection and Affordable Care Act (PPACA), and Obamacare. All of the terms refer to the same federal statute that President Obama signed into law on March 23, 2010.

The diversity of disability

Disability can occur in any body system or several systems at once. Sometimes, a disability is clear, but other disabilities can be “invisible.” The two most common types of disability center on mental health or musculoskeletal disturbances, according to the Social Security Administration. But disability covers a huge spectrum from developmental and congenital conditions to sensory, cognitive, and emotional differences. With the aging baby boomer population and the link between disability and age, the number of disabled persons is expected to grow considerably in the coming years. Many of them will be women, who tend to experience higher rates of disability than men.

Data on the healthcare experiences of people with disabilities are limited, says Iezzoni. Much of it comes from national surveys. What researchers do know is that people in the disabled community experience relatively increased rates of poverty, low education, unemployment, domestic violence (including against disabled men), and physical and attitudinal barriers to a good quality of life.

Barriers to care

 Barriers to care might be the most important obstacles, literally and figuratively, that a person with disabilities encounters.  These barriers are among the issues that the new healthcare reform can address. In comparison with the nondisabled in the United States, people with disabilities receive fewer screening and preventive services. For example, women with disabilities have much lower rates of Pap testing and breast cancer screening and are less likely to be asked about reproductive health and contraception. “Part of this is attitudinal,” said Iezzoni, noting that doctors often behave as if sex and reproduction are just not part of the lives of people with disabilities.

Physical barriers also hinder access to care, and even medical equipment itself is often not adaptable for people with disabilities. For example, medical examination tables are very high, and women with disabilities may have difficulties getting onto one or maintaining the typical position for a pelvic exam. The same might also be true for mammography equipment.

“Women with disabilities are far less likely to get standard of care procedures for breast cancer and their outcomes are worse,” Iezzoni explains, referring to her own research. Among the disparities that health reform is intended to address are higher rates of mastectomy (complete breast removal), rather than lumpectomy (limited to removal of the tumor) for women with disabilities, lower rates of radiation therapy needed to produce disease-free survival, and higher death rates from breast cancer. Providing people with disabilities a chance to be more independent is also a pivotal issue for healthcare reform.

Trying to build in measures to improve access for people with disabilities is uncharted terrain, however, according to Iezzoni. That in itself might serve as an intangible reflection of what people with disabilities can encounter every day in a world without appropriate accommodations. It is also, though, terrain that the new healthcare reform might smooth out for the population with disabilities (see sidebar), lowering barriers and improving access … and quality of life.

10 Ways Healthcare Reform Might Help Individuals with Disabilities

1. Insurance can no longer be denied to individuals with pre-existing conditions, including disabilities and chronic medical conditions.

2. Ends the practice of rescissions, which allowed insurers to drop coverage for individuals who develop a serious health condition.

3. No more lifetime or yearly dollar caps on coverage will be allowed.

4. Beginning this year, health plans must cover basic preventive care, annual checkups, and health screening at no charge to anyone.

5. Encourages more accountable, coordinated care through development of patient-centered medical homes. However, one key problem is that many of the contracted organizations have had no experience providing care for individuals with disabilities.

6. New minimum technical criteria for medical diagnostic equipment that are accessible to people with disabilities must be specified within 24 months of passage of health reform, potentially helping improve access to care. However, the standard falls short in that installation requirements in physician offices or clinics are not specified.

7. All federally conducted or supported health care programs, activities, and surveys must add six specific questions reflecting functional areas pertinent to individuals with disabilities—seeing, hearing, cognition, mobility, self care, and performing errands into all health survey data. This data has not been collected previously.

8. The Centers for Medicare and Medicaid Services are testing a new Independence at Home Demonstration Program at 18 sites across the country. It will offer primary care services at home to people with multiple chronic conditions. The goal is to improve health outcomes and lower Medicare costs. If this program proves successful, it could permit broad changes in supporting independence at home across the nation.

9. Long-term care services and supports for people in their home or the community are ratcheted up through a variety of enhancements.

10. Aging and Disability Resource Centers are funded through ACA grants to states. These centers are meant to offer people visible and trusted information on long-term services and support through Medicare.  

 Note: Iezzoni’s remarks are from a presentation she made at a Rising Women’s Voices teleconference on the impact of health reform for women with disabilities. Story written by Laura Newman. This story first appeared on DoubleXSci.org with a slide show (not posted here), but viewable on DoubleXSci. Shout out to Emily J. Willingham and Jeanne Garbarino for hosting it, invaluable editing, and images added to original post.

Writing About Alzheimer’s and Dementia Gets Complicated

Now that I have spent three days listening to expert neurologists, demographers, caregivers, and policy people talk about Alzheimer’s, I come away from the meeting with a sense that the story is complicated, and that I hope it is not reduced to talking points and sound bites. I didn’t feel that it was at the meeting, but I can see how reporting could go awry, and not really help readers or society out.

I don’t want to cover Alzheimer’s disease pursuing the “awareness” route, namely pressing how many millions of Americans have the disease, and how unabated, with the graying of America, these numbers will rise astronomically. There is no cure for Alzheimer’s disease. Existing drugs are not all that beneficial, and when they help alleviate symptoms, it seems to be for a very brief window, in a subset of patients, that nobody has convinced me you can predict. Are we at square one? Should we grab at any way to mobilize the troops for the disease?

There’s more negative news: clinical trials for years have been negative and clinical trial enrollment is poor. Can it be improved? Should I promote enrollment in clinical trials? What might a patient gain from participating in a clinical trial? What about informed consent? How do patients with Alzheimer’s disease give informed consent?

Is using amyloid as a biomarker something that should be abandoned because reductions in amyloid have not shown improvements in the disease? What is the state of the science?

What about labeling patients with mild cognitive impairment or Alzheimer’s? Is mild cognitive impairment an entity that is meaningful, or should it be discarded? Some speakers at the Alzheimer’s disease forum were skeptical about the classification, which is not used in many parts of the world. Will mini-screens being in primary care offices become popular because experts and advocacy groups say that they will reduce stigma and work effectively? Under what conditions, could Alzheimer’s disease be overdiagnosed? Remember, older people are on many medicines, they can have electrolyte problems, hearing problems, and other conditions that could impact on diagnosis.

What kinds of protections are in place for people? There is a big push by pharma and the Alzheimer’s Association to be certain to record an Alzheimer’s disease diagnosis in a medical record. That may seem relatively innocuous for old, retired people, but could some people lose jobs, lose health and long term care benefits, be barred from housing? What is the upside to getting a higher count of Alzheimer’s patients? Do the benefits outweigh the risks?

I also think that battles over Medicare need to be discussed with the possibility that many more Americans are likely to be afflicted with Alzheimer’s. Where will they get care? How do Americans want it to look? Will Alzheimer’s patients be warehoused? Can community programs manage people with end-stage Alzheimer’s?

Should innovative non-drug approaches in the arts be funded more widely? How can we reduce stigma about Alzheimer’s disease? I’d like to know a lot more about what is happening today to people with advanced Alzheimer’s disease. Can they find placements? Where? What are equitable ways to fund Alzheimer’s and dementia care?

Long Term Care

How should the country support long-term care? Should children be taught, as they are in lower school, in some parts of Japan, about caregiving, dementia, and Alzheimer’s? What about minorities, lesbian, gay, bisexual, and transgender people with Alzheimer’s? What about aging single people, who are all over America, and growing around the world? What services are available for them? How will we plan for them?

Alzheimer’s disease issues do not exist in a vacuum.

People should be aware of all of these issues, as people think through a national plan for Alzheimer’s disease and think through federal and state policy. I am intrigued that some countries have national plans for Alzheimer’s and I hope to write about them. Perhaps they will be instructive for the US. Far more patient stories need to be told to understand the complexities.