As Aging Population Increases, Elders and Allies Fight for Social Supports
By Eleanor J. Bader
The result? By the time folks reach age 75, 6.7 percent of men and 12.3 percent of women live below the poverty line: $11,880 for a single person and $16,020 for a household of two. Gender, of course, is a key variable: Women earn, on average, a lower annual income -- typically caused by wage disparities as well as breaks in employment to rear children -- resulting in smaller monthly Social Security checks. This is no small thing since a lower income impacts everything from access to health care to the ability to secure decent, affordable housing and nutritious food.
Race also impacts income, causing many Black and Brown seniors to live in poverty. The federal Administration on Aging reports that in 2013 poverty among the elderly impacted 19.2 percent African Americans; 18.1 percent of Latino and Latinas; 14.7 percent of Asian Americans; and 7.8 percent of whites aged 65 or older. Indigenous seniors have it even worse. Although Indigenous people make up just .05 percent of those over 65, a full 42 percent of tribal seniors are impoverished.
Indeed, the collision between poverty and aging is a problem of startling magnitude. It's also more complicated than it seems, thanks to the rapid aging of the US population. For one, since 1900, the percentage of Americans aged 65 or older has more than tripled. Two years ago, they numbered 46.2 million and made up 14.5 percent of the total population. Flash forward to 2040 and 21.7 percent will fall into that category. Even more remarkable, each and every day 10,000 US residents turn 65.
How they age, and what social supports they acquire, touches on an array of hot-button issues, from government's role in providing income and services for elders, to the question of whether health care is a human right, to the ways families and communities can be helped in caring for, and better integrating, older people into everyday life.
Avoiding One-Size-Fits-All Solutions
There are no one-size-fits-all strategies to ensure healthy and productive aging since different people want different things. Some want to remain in their homes, no matter what, while others prefer facilities that offer meals, planned activities and opportunities for socialization. Some want to retire at the first possible moment while others want to -- or often must -- work until they are unable to do so. Some want routine contact with diverse groups of people, while a different cohort wants to live exclusively with age-mates.
So what to do?
Diane Menio, the executive director of the Center for Advocacy for the Rights and Interests of the Elderly (CARIE) starts by listening. Based in Philadelphia, CARIE has developed a "case to cause" model in which staff field between 4,000 and 5,000 telephone calls a year from individuals. These calls help the agency identify systemic issues that, in turn, determine the group's organizing agenda.
Right now, Menio told Truthout, one of CARIE'S main concerns is the imposition of privately-run managed care on in-home services and skilled nursing facilities. Beginning in July, 2017, Menio said, just two companies, Maximus and IBM -- yes, International Business Machines -- will be in charge of enrolling people for home care and assigning providers to them.
"This will pose complications for consumers. It's a major change," Menio said. "Maximus began enrolling people in April 2016 and already we've seen loads of problems, including delays and lost paperwork. When people need a service to be able to stay in their homes, they need it quickly and can't wait six months for the paperwork to be processed."
Menio's frustration is obvious, but she is also resigned to the trend toward privatization. "We're not going to be able to stop this. [The] state is being pushed by the feds to do what Pennsylvania is doing. The government seems to want homecare and nursing homes to be modeled after HMOs where consumers will have to use an in-network agency or be willing to pay out-of-pocket for a different provider."
At this juncture, CARIE is publicizing Maximus' glitches as loudly and widely as possible. But the group is also pushing for the establishment of an Ombuds Office so that seniors and their families will have an impartial place to lodge complaints about delays and the quality of care being offered. Lastly, they are working to develop a formal appeals process for consumers.
New Strategies for Long-Term Care
Not surprisingly, the issue of long-term care (that is, who provides and pays for it) is contentious, and while Pennsylvania is racing to privatize, other states are resisting -- even going so far as to consider something radically different. Take Hawaii.
Although the idea of a Long-Term Care Benefit Trust Fund did not pass Hawaii's state legislature last term, the state's lawmakers did put it on the table. Kevin Simowitz, political director of Caring Across Generations, told Truthout that the fund would have been the first social insurance program in the US specifically designated for long-term care. "The program would create a fund by increasing the state excise tax on all goods and services," he began. "More than a third of the revenue would come from tourists who would not be able to draw on the money, but everyone would pay into it. The fund would then provide $70 a day for up to 365 days of care and help pay for things -- typically called activities of daily living -- which a particular senior needs help with."
As written, the bill would have allowed seniors to use the benefit trust fund whenever they needed assistance -- up to a lifetime cap of 365 consecutive or nonconsecutive days. What's more, the grant could have been used to pay for things like wheelchair ramps, handrails, or respite care, a huge help to seniors and the countless Hawaiian families scrambling to afford these goods and services.
Simowitz expects the trust fund bill to be reintroduced this year and sees Hawaii as a bellwether. Already, he says, other states have expressed interest in the idea. Washington has funded a large-scale study of long-term care needs; the results are due in late December. Maine, Michigan and Oregon are also considering options.
"Talking about care opens an unusual window into conversations about the economy," Simowitz continues. "A $3,000 tax deduction, the Credit for Caring Act, has been proposed in Congress. It's not nearly enough but it's a step forward, a positive development. In addition, the issue of care gives us a way to discuss who leaves the workforce to provide this aid and gives us a way into the cultural change piece of the conversation; it gives us a way to challenge the idea that daughters are supposed to be caregivers, and that paid caretakers are not really working so should not earn much."
There have been significant inroads made on these topics, Simowitz says. "The gender divide is still there but at the same time, a lot of male hands are being forced by demographic changes. They simply have to provide the care.... Care is proving to be a universal issue. It moves from the personal into the political and bridges divides."
Elaine Ryan, vice president of state advocacy and strategy at AARP agrees with Simowitz and points to several small but tangible victories in winning respect for caregivers. For example, she says grassroots mobilizations have resulted in 33 states passing the CARE Act. "The Act requires a hospital to ask a patient for the name of a designated family caregiver," Ryan says. "Once they're named, the caretaker has to be apprised about what is going on, bringing them into the loop." In addition, prior to discharge from a facility, hospital staff in those states must give the caregiver adequate notice -- at least 24 hours -- of the anticipated release and make sure they receive language-appropriate training in dispensing medication or performing tasks like cleaning an IV, checking a wound, filling a syringe or identifying an infection.
Ryan is further buoyed by the extension of the National Fair Labor Standards Act to home-care workers, enabling them to earn overtime pay and other labor protections. Additionally, family members in New York and Vermont -- the daughters, sons, cousins and grandchildren who typically provide care on the fly -- recently won the right to use employer-provided sick time for caretaking, and Ryan expects many other states to pass similar measures in the next year or two.
AARP's other work revolves around creating uniform guardianship and power of attorney -- sometimes called conservatorship -- laws to enable movement across state lines. This comes up when a person has guardianship (the authority to make decisions regarding the medical care, place of residence, or major life decisions of a person who has been deemed mentally or physically incompetent by a court) or power of attorney (which adds control of finances to the aforementioned responsibilities). Should said person want or need to move their charge across state lines to a different facility or to be closer to them, divergent state laws can make this virtually impossible. "One woman," Ryan explains, "told us that it would have cost her $50,000 to establish out-of-state guardianship so that she could move her brother nearer to where she lived after he got into an accident. She couldn't afford to do it. There should be state-to-state reciprocity on this."
Then there's the perennial issue of money for everyday living. There are approximately 40 million family caregivers who lose about $350,000 in earnings due to time away from the job, Ryan noted, adding, "This is a huge hit to families, which is why we support the Credit for Caring Act as well as flexible work hours so that people don't lose their jobs when they take dad to the doctor."
Ryan would also like to see every employer offer savings options to their employees. "We know that people are 15 times more likely to save -- whether it's opening an IRA or starting a 401K -- if it's offered at work," she said. "Fifty-five million people, 60 percent of them people of color, do not have access to savings plans for retirement on the job. This is a way to start closing the racial disparity gap."
Illinois law, she added, now requires every company with more than 25 workers to offer a low-fee, simple savings option that can move with a worker when he or she changes jobs, something Ryan hopes every state will do in the near future.
Short-term, AARP is focused on opposing the privatization of Social Security and making sure there are cost-of-living increases in monthly benefits. It is also supporting the Recognize, Assist, Include, Support, Engage (RAISE) Act, a first step in authorizing the federal government to put together a national caregiving strategy.
Issues Facing LGBT Elders
While issues of income security and access to long-term care affect most retirees, LGBT seniors face these issues at greater rates. SAGE (Services and Advocacy for Gay, Lesbian, Bisexual and Transgender Elders) works to meet their social, emotional and material needs. "Older LGBT adults face a lot of challenges that impede their ability to age in a healthy way," said Aaron Tax, director of federal government relations at SAGE. "Many are isolated. The poverty rate for LGBT seniors, 24 percent, is higher than for other adults due to workplace discrimination and lack of job protections."
These things are compounded, he continues, by internalized oppression and fear. Although many LGBT elders came out decades ago, he says something happens as they get older. "Many go back into the closet when they begin to feel more vulnerable," he reports.
In addition, he adds, some members of the community grew up at a time when harassment and bigotry were so ubiquitous they were taken as a given. "Part of the challenge," Tax said, "is empowering LGBT seniors to understand that they should not be treated badly."
HIV is another challenge faced by LGBT seniors at greater rates: About half of people living with the virus are over the age of 50. "LGBT seniors don't get tested or treated and often live in poverty, without family, and are not getting the care they need and deserve," Tax continued. "HIV providers are not well-versed in issues related to aging, and gerontologists are not well-versed in HIV."
SAGE sees its role, at least in part, as training providers to be culturally competent. Equally important, says Tax, is sensitizing LGBT activists to the needs of aging community members. "We train LGBTQ groups to be welcoming to older folks, reminding them that many LGBT seniors bristle when they hear the word 'queer.' Many of them see it not as a welcoming word, but as a taunt."
Needless to say, there is a slew of diverse issues confronting American elders, gay and straight, from the need to reduce the price of prescription medications, to the need to fend off abuse from scam artists. Add in poverty, social isolation, health problems and prejudice, and you've got an overflowing to-do list.
At the same time, the US does not need to start from scratch. Germany and Japan offer a range of services for those 65 or older, and we can learn a great deal from them if we choose to. For one, both countries have developed a comprehensive, universal, long-term care fund -- similar to the plan proposed in Hawaii -- that elders can draw from.
That said, the benefits offered by the two countries have little else in common. Germany, for example, has since 1994 imposed a tax earmarked to give a cash allowance to any family that spends more than 14 hours a week aiding an elderly or infirm household member. Family members can use this grant to offset their out-of-pocket expenditures -- essentially compensating them for time out of the paid workforce -- or hire someone else to come into the home and provide needed services.
Japan's program, instituted in 1997, is different. Rather than receiving an allowance, families instead receive a range of free, licensed services including adult day care, home modification and assistive devices, and in-home aid from a visiting nurse.
Both nations took these steps in response to demographic shifts born of a rapidly aging population. Isn't it time for US lawmakers to get their heads out of the sand and do likewise?