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I have a very strong reaction to advertisements for investment products. The bedrock message of these ads is that you can’t count on anyone else to take care of you, so you’d better take steps now to ensure that you have a financially secure retirement. And the best way to do that is to purchase the annuity or whatever other product the ad is selling. The answer to financial instability down the road is capitalism.
I see it as a stressful treadmill game the vast majority of us won’t win. If we can’t count on each other to bring about a secure retirement for everyone—through public programs like Social Security—then we’re screwed.
I have the same strong reaction when I hear about the soaring cost of long-term care. This subject is of particular interest to me because I’m a daily consumer of that care. I use a power wheelchair to get around all day, every day. Every morning and night, someone comes to my home to assist me with all of the daily tasks I can’t do for myself.
I’ve hired several people to help me. I call them my pit crew, and they are paid an hourly wage. I could never afford to pay them on my own, but that’s OK, because a state program largely funded by Medicaid pays their wages.
I’d bet that all of us, or at least someone we love, will eventually need some form of assistance with navigating our homes and communities for a prolonged or indefinite period of time. But when we think about how we would pay for that help, it feels hopelessly daunting. So we shrug and move on and hope it never happens to us.
If it feels dismaying, that’s because it is, particularly when viewed through the lens of capitalism. It’s laughable to believe that many of us could even think about saving enough to cover the cost of long-term care. We feel abandoned because that’s the position capitalism puts us in. The glorious free market can’t figure out a way to address this need that doesn’t exploit the hell out of those who receive and provide long-term care.
The answer is socialism and creativity.
When I say socialism, I mean making an unwavering societal commitment to the ideals of fairness. In this case, the ideal is that everyone in need of home and community assistance must get it swiftly and at no cost. They must be able to hire anyone they want to help them, including family members. And those providing the assistance must be paid a living wage and receive benefits.
When I say creativity, I mean making an unwavering societal commitment to turning that ideal into a reality, by any means necessary.
In other words, no one who needs this kind of assistance should ever be made to feel like a burden. Because, too often, that’s the way it is now.
If you need assistance, like I do, and you can’t turn to the public, then you turn to your family. But it’s impossible not to feel like you’re imposing on them and holding them back. Family members likely feel obliged to help you for free. And because they are helping you for free, you feel as if you have little control over your life. You feel as if you have to accept whatever help they provide because you have no choice. Who else would do it for free?
Paying my workers a decent wage makes a big difference. First of all, their labor is worth something. It’s important. And it’s worth a lot more than they’re currently paid.
Also, paying them means there’s something in it for both of us. I need their help and they need an income. We both have negotiating leverage. If they don’t do a good job or they want to move on, I’ll look for someone else.
Relying on family for help assumes that a person has a family that’s willing and able to help in the first place. I come from a loving and supportive family, but they’re all dead. Even if they weren’t, they’d be too old to help me much in this regard.
It’s laughable to believe that many of us could even think about saving enough to cover the cost of long-term care. We feel abandoned because that’s the position capitalism puts us in.
If you don’t have a family that’s willing and able to help you for free, capitalism offers the dreadful alternative of banishment to nursing homes, which often are highly profitable private businesses. The more they can lower their expenses, the larger their potential profits. That’s why they pay their workers so poorly and feed their residents a lot of Creamette.
The costs of even entering a nursing home add insult to injury. According to the insurance company Genworth, the national median monthly cost in 2021 for a semiprivate room in a nursing home was $7,908. People have to figure out how to pay for that. A family might have to liquidate financial assets to pay for the nursing home until they are impoverished deeply enough to qualify for public programs like Medicaid.
No wonder family members feel obliged to care for their loved ones for free, for hours on end. They see themselves as the only thing standing in the way of their loved one having no option but to surrender to a miserable existence in a nursing home.
Watching family members struggle so much physically, emotionally, and financially magnifies the guilty feelings the person receiving assistance experiences. It makes them feel like even more of a burden.
I get the help I need because my state, Illinois, has a Home and Community-Based Services (HCBS) waiver. This means that Illinois has received permission from the federal government to spend Medicaid funds in a manner that enables disabled people like me to hire folks to assist us at home.
According to Medicaid’s website, HCBS waivers are designed to “meet the needs of people who prefer to get long-term care services and support in their home or community, rather than in an institutional setting.”
And according to AARP (formerly known as the American Association of Retired Persons), 77 percent of adults fifty and older prefer to “age in place.” I’m amazed that number is so low. I thought it would be at least 99.9999999999 percent. Why would anyone prefer to move into a stinkin’ nursing home?
Anyway, Medicaid’s website also notes that in 2009, nearly one million people were receiving services under HCBS waivers, and there are currently 257 active waiver programs operating in nearly every state and in the District of Columbia.
The broad concept behind waivers is a good one to build upon, but some details make them very flawed. Thus, a whole lot of disabled people who need and desire HCBS assistance still can’t get it.
For instance, Medicaid says that HCBS waiver programs must “demonstrate that providing waiver services won’t cost more than providing these services in an institution.” Imposing this requirement on states that want to implement HCBS programs implies that it’s OK to incarcerate disabled people in nursing homes if it costs the government less money. That’s wrong. This should be a matter of rights, not of fiscal considerations.
Nursing homes and other institutions don’t have to live up to the same standard. They can receive Medicaid money to help cover the cost of serving their disabled residents, whether it’s cheaper or not.
And the idea of waivers is itself flawed. States have to get permission from the feds to deviate from the norm if they want to use Medicaid funds to pay for HCBS. HCBS should be the rule, and institutionalization the exception. The system is currently rigged.
Lawmakers have introduced federal legislation to address this problem, called the HCBS Access Act. The main change it would make is to require states to fund HCBS programs for Medicaid-eligible residents who prefer them, rather than having to apply for waivers.
In a brief summary of the bill, its sponsor, Senator Bob Casey, Democrat of Pennsylvania, wrote that if disabled people and older adults “want to remain in their homes with help of Medicaid Home and Community-Based Services (HCBS), they are often put on a waiting list and can wait years or even decades for services and supports. Medicaid policy has always paid for nursing homes and other institutional care . . . but will not pay for home and community-based services unless a waiver has been granted. This bill would put both options on equal footing and give families an equal choice.”
If passed, the bill would help a lot. But it would still leave people behind, because it would continue to tie HCBS eligibility to Medicaid eligibility. That means disabled people and their families may still have to impoverish themselves to be poor enough to qualify for Medicaid before they can qualify for publicly funded care assistance.
We still have a lot of work to do to live up to the ideal that everyone in need of home and community assistance must be able to get it—swiftly and for free.