(Interview September 2019. Oil on linen, 40 ins. x 30 ins.)
Update 2021
"Hello, I have some exciting news to share with you. I received a phone call today and I now have Medicaid full coverage!! Praise God!!" Barb messaged me.
"Full coverage?" I don't even know what that means. Barb had been trying to get Medicaid to supplement her traditional Medicare policy but she has been repeatedly denied Medicaid, a public health coverage program. Barb owns slightly more land than allowed under the Medicaid rules. And now she qualifies? How so? Did she sell her family's land? Or did she divorce her husband to meet the eligibility requirements? No.
Barb just can’t bring herself to lie or divorce her husband or sell land that really belongs to her children so she can satisfy the dual eligibility rules and get the healthcare she needs.
Later I asked Barb what was going on. She did not, in fact, qualify for Medicaid to supplement her traditional Medicare. She wrote later," I'm not getting it. It turned out that it would not pay for my meds in any way whatsoever. They made a mistake and had to take it back."
Then Barb referenced "$0 premiums." Without actually seeing Barb's paperwork, I tried to deduce what was going on. $0 premiums usually point to Medicare Advantage plans. Is that what she has now? Does SHE even understand her coverage? I don't think so. Barb cannot explain it to me.
$0 premium can be misleading. Medicare Advantage insurance coverage may require Barb to stay within a network, and pay higher out-of-pocket costs. Barb says as much in her latest message to me. "I'm on that UnitedHealthCare. It beats just Medicare but I still pay a lot out of pocket."
I asked Barb if there was anything she wanted to add to her story. She said, "Most people are still in the same old situation and I don't think it's fair that the Medicaid policy still doesn't help certain individuals. I feel like we are better off never to have worked in our lives. It's a disaster in our area with the COVID. I couldn't get food stamps or extra things I needed. The stimulus did help, however it's not helping the people whose income is lower than others'. I'm still stressed and aggravated. The government is supposed to be for families not against them."
ARTIST NOTE (from 2019)
A marriage, 3 acres of rural Southern Virginia land in Appalachia, and Medicare/Medicaid dual eligibility rules mean poverty, insufficient medical care, rationing medicine and constant worry for Barb Deel. “I’m not looking for pity. I’m looking for solutions for myself and everybody else.”
Barb's disability qualifies her for health insurance through the federal health insurance program called Medicare. But Medicare has coverage limits and needs to be paired with a supplemental policy to cover what Medicare does not. Medicare enrollees often buy supplemental policies from private insurers. Very low income Medicare enrollees, however, often qualify for another federal (and state) run program called Medicaid to pay what Medicare does not. Barb could not afford to buy a private supplemental policy. She needed Medicaid to supplement her Medicare coverage to become what is known as a dual eligible.
A dual eligible beneficiary is a person who qualifies for two social programs, Medicare and Medicaid. These two programs work in tandem. Together, they usually provide comprehensive health insurance coverage for a senior or disabled person. Barb does not qualify because under the Medicaid rules she owns too much. So she cannot not afford to buy a private supplemental policy. And she does not qualify for dual eligibility. Medicare insurance alone is not comprehensive coverage.
This is a story of how one Medicare enrollee is locked out of medical care, resorts to free clinics even though she has Medicare, and whose days are overloaded with worry – stress that inflames the medical conditions Medicare insurance was supposed to help her overcome.
This story looks at the collapsed Jenga-like health insurance tower in Barb’s life that keeps her trapped and UNDERinsured.
Barb’s story is about portrait number 80 in the Art As Social Inquiry 100 portrait series on how we access healthcare in the US. Here is what I know after having studied our system for 12 years. Our healthcare system makes us afraid and desperate. Our worry about getting treatment consumes us as much as the disease itself.
Access to healthcare should not be this complicated. Trying to get healthcare can make us liars. We find ways to satisfy the powers-that-be in an attempt to unlock the royal doors to treatment and medicines we need to live.
Barb just can’t bring herself to lie or divorce her husband or sell land that really belongs to her children so she can satisfy the dual eligibility rules and get the healthcare she needs.
I often start an interview that I think will go in one direction then, more times than not, the story takes a turn into a dark, complicated healthcare alleyway where too many Americans get mugged or even killed by a turn of events that cause hardship, bankruptcy and sometimes death.
Barb is scared and stumbling in that back-alley hell right now. I thought I was writing a story about Medicare/Medicaid dual eligibility. Instead, I am the voice of record for a life desperate to find a way to live and take care of herself. For the record, that desperation bleeds into not having $50 to get her grandchildren’s modest Christmas presents out of layaway. Or worrying about having enough food for the month. Or skipping a medicine because 3 pills cost $15. Or relying on her daughter to send gas money so she can spend Thanksgiving with her family. For the record, this is what difficult access to healthcare looks like.
The system has broken too many of us like muted, battered dogs. Quiet desperation about getting healthcare, what treatment will cost, losing a job and the health insurance that goes with it, being buried in medical debt, going untreated, being insured and still getting a huge bill --- fear fear fear -- are our national shame.
Most of my subjects feel their way through their dark health insurance dilemmas with little light except for the hope that just maybe it will all work out. They have no idea how.
As I start to dig, I don’t know how either. And that’s where my pain starts. By the time people talk to me, they have been ground up and thrown onto our vast medical human waste heap. They’ve tried everything.
Yeah, it’s that bad when one sees how inadequate medical care taints every part of a person’s life right down to the first thought waking up and the last stressful sigh before falling asleep. Enough is enough. The system must change.
Here is Barb’s story.
(from a 2019 interview)
Medicare Enrollee and Underinsured, Age 53
DUAL ELIGIBILITY (two parts)
Part 1: Medicare
Barb has Medicare health insurance. Medicare is a federally funded health insurance program for seniors 65 and older, and some younger disabled people.
Barb was a young woman when she had a nervous breakdown taking care of two small children and a dying husband. Later, her health spiraled to include high blood pressure, and an autoimmune disease that causes her skin to break out. “I have a lot of issues because of the autoimmune disease. I suffer from depression, of course.”
Barb’s poor health qualified her for Social Security Disability benefits which, in turn, made her eligible for Medicare health insurance. Many think Medicare insures only people 65 and older. But those receiving disability benefits can also qualify for traditional Medicare health insurance.
Traditional Medicare, however, does not pay 100% of an enrollee’s medical bills. (Not to be confused with Medicare Advantage, a different insurance program for seniors and the disabled who qualify. I cover Barb’s experience with Medicare Advantage later in the story.)
Traditional Medicare has several parts. Part A covers hospitals. Enrollees generally do not pay a premium for Part A but there is a $1,408 deductible, money Barb would have to pay before Medicare covered her hospital bills if for some reason she was admitted to a hospital. A $1,400 bill would create great financial hardship for Barb. She already struggles to buy food.
Medicare Part B covers doctors and tests. There is a $144 premium for Part B. Barb gets that amount deducted from her Social Security Disability check every month. There is also a $198 deductible for Part B. OK, not a killer. BUT, and the big “but” is that Part B costs are uncapped.
Uncapped. Barb would have to pay 20% of Part B costs. That means that if outpatient cancer treatments cost $100,000 Barb would be billed $20,000 under Medicare Part B coverage, for example.
The part Barb would have to pay with traditional Medicare makes her under-insured. Underinsured means that the Medicare insurance coverage she has does not protect her from medical bills she cannot afford and would probably bankrupt her.
When Barb says she is stressed, she means she has medical conditions that require regular care, and she doesn’t know what she will do if she ever had to go to the hospital or get expensive outpatient care.
What do other people do?
Many people supplement their traditional Medicare insurance with a policy from a private insurer. These private, supplemental plans are called Medigap policies. Private Medigap plans help pay costs that Medicare does not cover like co-payments and deductibles.
Barb, however, cannot afford to supplement her government Medicare insurance with a private Medigap policy. Without the supplemental policy, Barb could be on the hook for many thousands in medical bills. But an additional $150 - $200/month premium for a Medigap policy was and is well beyond her means. Her monthly disability benefit is about $800/month.
Please note. Traditional Medicare is very popular and a good deal less expensive -- even with the cost of a Medigap policy -- than if one pays the entire premium for private health insurance in the under 65 market. When this artist turned 65 and qualified for traditional Medicare, I added a supplemental Medigap plan and a prescription plan to my Medicare coverage -- all for less than half of what private insurance cost me. Also, my deductible went from $5,500/year to $185/year. That’s not a typo. The relief I felt at being properly insured at a very affordable price through traditional Medicare was incalculable. But a lot less expensive does not mean affordable if one cannot afford a supplemental policy, even at $175/month.
Part 2: Medicaid
So what about people on Medicare like Barb who can’t afford private supplemental policies to cover out-of-pocket costs that could bankrupt them? The government addressed this problem for some by creating dual eligibility.
Dual eligibility means that the very poorest Medicare enrollees also qualify for Medicaid benefits. The two programs are different.
Medicaid is a federal/state health insurance program for financially needy people.
There is a big difference between Medicare and Medicaid, how they are funded, and the populations they serve.
A sliver of the population, however, meets eligibility requirements for both social programs. The benefit of dual eligibility is that much of the out-of-pocket costs MediCARE does not pay, MediCAID insurance coverage will. (Caps are mine.)
Dual eligibility would seem the ideal solution to Barb’s overexposure to out-of-pocket medical costs she could face with traditional Medicare coverage alone.
But Barb does not qualify for Medicare/Medicaid dual eligibility. To become eligible, she would have to sell 3 acres and divorce her husband. Then she would be poor enough to get the medical care she needs.
~
A DIVORCE
A bulldozer blade split open Barb’s husband’s leg. He also fractured 5 vertebrae in the same work accident. “He’s in bad shape,” Barb says. Her husband lost the ability to work. His disability benefit combined with Barb’s puts them just over the income limit for Barb to qualify for dual eligibility status that would give her proper access to medical care.
She could lower her income by divorcing her husband thus upping her chances of meeting dual eligibility rules. “People do all the time,” the local Social Services office told her. But Barb and her husband would not be permitted to live together. “People do anyway,” she was told. She would have to lie. She would have to game the system. “I will be haunted if I have to lie. I don’t need the stress. Something needs to be done differently. I understand a lot more than people think I do. I’m afraid to play the system. I’m afraid.”
Let’s say Barb and her husband divorced. How could they live apart? They can’t afford to run one household with their combined disability benefits. What would be the point of making themselves even poorer by living apart just so Barb could qualify for Medicaid to cover medical bills her Medicare insurance does not? She’d have adequate medical coverage but no money for food or enough to pay her mortgage. And she would be alone -- making her more depressed and possibly sicker. “We both need each other.”
Still, a divorce would not be enough for dual eligibility for Barb. There’s the matter of the 3 extra acres her mother-in-law gave her.
THE LAND
When Barb’s first husband died, her mother-in-law gave her 4 acres so she would have somewhere to raise her 2 small children. Barb got a mortgage for a double-wide trailer that she put on the land. “I only owe about $14,000 on it. I mean I’m getting it down.”
Social Services told her that to qualify for Medicaid and become a dual eligible, she could have the trailer and ONE acre. She would have to sell 3 acres.
“The land isn’t mine to sell, really. My mother-in-law gave it to me for the kids. It really belongs to them.” Selling land that she does not believe is really hers goes in the same crisis-of-conscience bucket as the lying about living apart if she divorced her husband. She couldn’t live with herself.
Even if Barb could sell the land, there is still the issue of having to divorce her husband to qualify as a Medicare/Medicaid dual eligible. We’re back where we started. Barb and her husband are not able to support two separate households. They’re barely supporting one. Even if she sold the land, she couldn’t afford to divorce her husband.
MEDICARE ADVANTAGE & OTHER STUFF
I thought Medicare Advantage might work for Barb.
Medicate Advantage plans are offered by PRIVATE insurance companies. Traditional Medicare is administered by the federal government. With Medicare Advantage, the federal government reimburses these private insurers for their Medicare Advantage enrollees.
At first glance, Medicare Advantage plans look to be a good deal. They cover hospitals, doctors, labs but go further and often include vision and dental coverage. Some Medicare Advantage policies for seniors have a $0 premium.
Investopia warns, however, when talking about Medicare Advantage plans, “Still, while many offer low premiums—sometimes as low as $0 per month—the devil is in the details. You will find that many plans unexpectedly won't cover certain expenses when you get sick—resulting in unforeseen out-of-pocket costs for you—and what they pay can differ depending upon your overall health”
Also, Medicare Advantage limits its coverage to networks. Traditional Medicare does not. Medicare Advantage enrollees must see providers in their insurers’ networks. Out-of-network coverage is often not covered at all or at a much-reduced rate depending on the plan. The Medicare Advantage enrollee could face thousands in medical bills if he or she saw an out-of-network provider.
Traditional Medicare insurance coverage on the other hand can be used anywhere in the nation at any hospital or provider that accepts Medicare. The vast majority of US providers accepts traditional Medicare. But, like Barb, those without a Medigap policy to supplement their traditional Medicare insurance could also face thousands in out-of-pocket costs.
Medicare Advantage turned out to be a major dud and just another creepy solicitation for Barb’s business. She got a heavy-handed sales pitch from the Medicare Advantage rep, not a well-intention analysis to see what was best for her. Barb sought advice from her pharmacist because drug coverage is crucial for her, and she was confused.
Barb has a SilverScript drug plan. SilverScript is prescription drug coverage that helps pay for Barb’s medications. Social Security deducts the premium from Barb’s monthly benefit. Barb didn’t remember offhand how much she pays. A quick internet search found that SilverScript plans run from $7.15 - $69.52/month. Barb does not know what policy she has.
Barb took the Medicare Advantage information to her pharmacist to help her decide which drug coverage was better for her – Medicare Advantage or SilverScript?
After reviewing the formularies for Medicare Advantage and SilverScript paired with traditional Medicare, Barb’s pharmacist advised her to stick with the Medicare/SilverScript plans. Barb would have higher co-pays for her medicine if she switched to Medicare Advantage.
The initial attraction of a $0 premium/month Medicare Advantage policy turned out to be a disappointment. The Medicare Advantage plan had higher out-of-pocket drug costs. Barb could not afford ANY increases at all.
Barb still has modest co-pays for her medications with SilverScript which she cannot afford. She does ration her medicine from time to time. She did not have the $15 co-pay for a recent prescription. The free local clinic has been a big help in treating Barb and getting her the medicine she needs.
Also, Barb would have much higher copays for her therapist if she switched to Medicare Advantage. Now she pays $6/visit.
Medicare Savings Program
The Medicare Savings Program helps low-income people with out-of-pocket costs. One applies through the state’s Medicaid office. Barb already spoke to the Social Services office at length about getting Medicaid to supplement Medicare. She was denied. She was not offered assistance through the Medicare Savings Program. We’re thinking she wasn’t poor enough for the Medicare Savings Program help either since that program is administered by the same office that processes Medicaid applications. As of this writing, Barb said she would try again and ask the Social Services office specifically about the Medicare Savings Program. She’s thinking the 3 extra acres and combined disability income with her husband will again disqualify her for the extra financial help.
Social Security Disability Benefits
Barb qualified for Social Security disability benefits, a monthly payout of about $800 in 1993, to help her survive after her nervous breakdown. She was able to get counseling. “I still go every month because of my nerves.” When I asked her if she thinks she’s gotten any better she said, “Not really. My nerves are just as bad now because I’m struggling more just trying to make ends meet with bills at home. Taxes on my land are about $900/year. I’m behind right now. My mortgage company said I can add it onto my mortgage. That’s what I’m going to have to do. Thankfully, my mortgage is just under $400/month.”
Barb supplements her income to buy food. “I went through the Social Security office. I’m working a job every other weekend. I’m allowed to work so much before they reduce my benefit. I only work 4 days a month. I run a cash register. The store is booming. I’m on my feet 16 hours every other weekend. My legs are hurting. I can’t sleep for the pain. I pray all the time I can do the weekend and get it over with.” After taxes Barb takes home $116 for two days.
“I grew up in poverty worse than now with dirt floors and a well for water. I got older. Worked. Things changed.” Barb got married, had her first child at 23 years old, and her second at 26. As a young woman, Barb worked as a secretary and receptionist in Washington DC and then Fredericksburg, Virginia. She moved back to rural Virginia near her first husband’s family when he got sick. She got a job with the Army Corps of Engineers. “I had a nervous breakdown trying to take care of two kids and a sick husband. I had to quit my job.
“Government wants me to kick my husband out, sell my land, and it’s all supposed to be good. That’s not fair at all. I thought government was for families. People on the outside won’t understand. You have a tiny bit too much to get government help with what Medicare doesn’t cover. And you have very little at the same time. I’m having anxiety attacks. This is my third round going through hard times. They leave this part of the world out. We are people. We have hearts. The government messed up. They don’t understand how the people in this area struggle to live.”
MORE THOUGHTS
Just my asking what has happened to my subjects and wanting to tell their stories become a sliver of hope for them. How can I be somebody’s hope? I spend hours trying to understand the mechanisms that put my subjects in the predicaments they find themselves in.
Even after hours of research, I’m never really, truly certain I see all the puzzle pieces.
And then the lightbulb goes off. I realize that if, after all that work, I can’t be certain I didn’t miss something, then how are average citizens supposed to know where to begin when the healthcare shakedown happens to them – people who live their lives working, raising children, paying bills, loving family, mowing lawns, helping friends move furniture, studying for exams, meeting deadlines, counseling adult children, shopping for groceries, stressing about getting the car fixed, finding the money to replace a cracked toilet, walking the dog, and maybe, after all that, seeing a movie every now and then.
The system seems to be designed or has morphed into such a complicated mess that it disables us. It’s a quagmire with no GPS pointing the way out. We feel spun around and confused like the Abbot and Costello classic comedy routine Who’s on First. Except that the twisted mess that is our healthcare system isn’t funny.
What I have come to realize -- and what most of my subjects don’t know -- is that this healthcare/health insurance system is a big incestuous knotted ball the size of the sun. At every turn toward reform that will help people get access to healthcare or fair treatment, slick lobbying money or countervailing forces protecting investor profits, hospital pricing, drug prices surprise medical bills and so much more swoop in to grease politicians’ palms for favorable policies benefitting their for-profit interests, not the patients.
Corporate interests saturate the media to bias the average Joe and Jane against meaningful reform. It works because there is no way a person could begin to grasp all the maneuvers that myriad for-profit interests put into play all at once, most of which do not benefit the patient/consumer.
Once when my kids were little, my husband and I took our youngest to the local hospital. We thought he had a concussion. He slammed into something at summer camp, hit his head and vomited. For some reason, the local ER doctor was so flummoxed that I told him to write on the discharge paper “Go to Children’s Hospital.” I knew I was giving the insurance company a reason to deny the claim by wanting different care. And they did. I countered with my handy doctor’s instructions telling us to go to Children’s Hospital…just following doctor’s orders. We would have been in for a fight if I didn’t have that note. The insurance company paid. In that instance, I played the game better. People go to hospitals for help. They don’t expect they’ll have to play mind games. They think their insurance cards gain them access to that help, not a billing nightmare.
I know how the system works, and I’m scared I will not be able to outsmart the for-profit players looking to boost their bottom lines.
Getting how the US healthcare system cons Americans would be like trying to see all the NYC subway routes and stations without the benefit of a map when one is standing on one platform, in one station.
If we can’t understand what is happening to us and how to make it stop, we get scared.
We often vote against our own best interests when we are afraid because we don’t have a grasp of the big picture. We’re inundated with ads that scare us into thinking that any meaningful change in the way the US delivers and pays for healthcare will make our situation even WORSE than it already is.
There’s no way a person can get how all the healthcare forces are set up like dominos falling into each other on a stage as big the Milky Way unless one is at this for a job. Hospitals tack on facility fees and pressure doctors to upcode, insurers pay inflated bills, our premiums go up and there go our raises. The employer is paying more for our healthcare. Insurers are no better. They can't make money on too many sick people. They find ways to pay as few claims as possible. Our system is one big stellar mess that folds our little horror stories into the cosmic healthcare soup, and nothing changes.
The enormity of a system swallowing us whole and bankrupting us emotionally, spiritually and sometimes financially mutes us. And that’s the way the healthcare industry wants it. If we don’t know how to speak about what’s happening to us because we don’t have enough context or vocabulary, we won’t make trouble by speaking up. We don’t know how to speak up because we’re not entirely sure what is happening to us and how to talk about it. Nothing changes.
The bystanders who have not yet been victimized by our predatory healthcare system are especially vulnerable to well-funded smear campaigns against change.
Although even they are beginning to see the rot encroaching on their employer-sponsored plans in the form of very high, unmanageable deductibles. It’s called “cost-shifting.” Consumers pay more; the industry covers less.
Our system is going to “cost shift” the middle class right out of existence if we don’t change the way we do healthcare/health insurance/drug prices in the US.