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Family Caregiver Falls Through Affordable Care Act Crack

Theresa BrownGold's painting "Family Caregiver" for her art project, Art As Social Inquiry.

(Interview 12/2013. Oil on canvas 40 ins. x 30 ins.)

Update 2022

When I did the Art As Social Inquiry 8 month website overhaul, some things did not sit right with me. I captured this beautiful soul's physical spark in the 2013 portrait (see below) but did not come close to portraying her big, bright, loving, and giving spirit. I repainted her. This new portrait (above) makes my heart flutter. I am a better painter now. And I can do this sitter's spirit justice.

2013 portrait. Oil on canvas, 40 ins. x 30 ins.

Update 2021

Lisa is still a full time caregiver without outside income to help her pay for health insurance. She is too young to qualify for Medicare, a federal health program. She has 3 1/2 years until she's eligible. She writes, "I'm looking forward to it!"

Lisa writes, "I am getting my health insurance from Blue Cross at $595 a month on the open market with a huge deductible -- trying not to get sick or use it at all. Looking forward to Medicare eventually. Recently had to get a Mohs procedure on my face. Holding my breathe to see what my out-of-pocket will be."

Lisa's deductible for her $595/month policy from a private insurer is $7800.

I tried to read between the lines in Lisa's note. Is she ineligible for subsidized insurance because her total household income disqualifies her for a Medcaid Expansion policy, or a subsidy on the Affordable Care Act exchanges? Would Biden's reforms in the American Rescue Plan help her? I don't know.

I can only push so far until my subjects grow weary of my probing years after the initial interview. And I know a lot more now than I did in the early days. I ask penetrating questions now.

People are not generally expert or even minorly skilled at playing all the angles for getting health coverage. Some can explain the specifics but most are polite and just somewhat forthcoming. Most don't know enough to expound on the ins and outs of their health insurance. The Affordable Care Act has given millions relief but not all. Those still scrambling to get good, regular, affordable care are battered dinghies in their teeny-tiny part of a healthcare ocean that can be as complex as it is ruthless.

I had her (I would not do much more to this if I had a do-over)... then I lost her brightness.


Theresa BrownGold's painting "Family Caregiver" for her art project, Art As Social Inquiry.
A study. Oil on canvas, 24 ins. x 30 ins.

(from a 2013 interview)

Family Caregiver, Former Business Manager in Family Business, Age 53, Insured

Lisa works full time caring for ill family members. Additionally, she is a single mother caring for a teenager with learning disabilities, and an adult daughter with autism. Her degree in business administration serves her well in executing her duties keeping the household running.

Lisa took over running family affairs. She found her father was over-medicated. He mother was being treated for breast cancer. The out-of-pocket expenses have created hardship for the family. There is a $10 list of medications at Wal-Mart. Her local pharmacy will match it. Using the $10 list is sometimes cheaper than using insurance.

I ask Lisa what a typical day looks like. She said, “I cook, do laundry, shop, organize, keep everyone on track with medications, drive to appointments, and negotiate hospital bills. My parents need help with showering, dressing. I make beds, clean bathrooms, cook and maintain cars. Everyone is on a special diet. I organize schedules – nurses, physical therapists and aides.”

I asked what she thought about her routing. Lisa said, “It would be nice to have advantages for how hard I work. I am saving the system a ton of money.”

In 2003 Lisa worked as a business manager in the family’s real estate business. The small business joined the local chamber of commerce. The family bought an insurance plan through their chamber of commerce. This arrangement accorded the family all the benefits of group health insurance without them having to contract directly with an insurance company for a group plan.

Insurance companies could not deny Lisa's family's small business a policy based on their health history. The Health Insurance Portability and Accountability Act of 1996 (HIPAA), protected group health insurance enrollees from preexisting health condition disqualifications. Kaiser Health News (KHN) reported in May 2019. "But the principal purpose of the law was to put an end to what was known as 'job lock.' That happened when people with preexisting health conditions were afraid to leave one job with insurance for another job with insurance because the new insurance would not cover their condition, or would impose long waiting periods."

And this from KHN. "HIPAA also required insurers who sold policies in the small-group market to sell to all small groups, regardless of health status, and to cover every eligible member of the group, also regardless of health status."

In 2003 the family, comprised of Lisa, her mother, father, sister, and brother-in-law, were insured for $680/month ($1009/month in 2021 dollars). Their policy's out-of-pocket costs forced Lisa to ration care. One family member hadn’t had a check-up in 6 years. Lisa put off having a mammogram until April 2013.

Lisa’s parents eventually retired and enrolled in Medicare. The family closed their real estate business. Lisa then worked for another family business and was able to continue to get insurance through a chamber-sponsored group plan.

Rates for group insurance were rising. Lisa was paying $526/month for group health benefits just for herself. The plan did not include prescription coverage. Lisa thought about buying an individual policy for herself directly from an insurance company.

Lisa had been healthy with no preexisting conditions. She thought she could get a good rate for a single policy on the individual market. This was 2008. The Affordable Care Act had not yet been implemented. She would not have the consumer protections the healthcare reform law put in place. The insurance company could review her medical records before deciding to sell her a single policy or not.

Lisa’s plans changed when she was diagnosed with skin cancer. An in-office procedure was all that was required. But the skin cancer was a preexisting condition, and prevented Lisa from getting insurance as an individual outside of a group plan. The preexisting condition caused rate quotes for a single policy outside the group to spike.

Lisa felt her only option was to continue to pay $526/month for insurance through the chamber of commerce group plan. The chamber policy did not include a prescription plan which Lisa wanted to cover her cholesterol medicine. Lisa often relied on “samples” from her doctor for her medication.

In July 2013 Lisa was able to get insurance with a prescription plan on the individual market. Enough time had passed since her skin cancer episode. Insurers' concerns about her preexisting condition abated.

Premiums on the individual market were cheaper than her chamber of commerce group insurance. An insurance company issued a policy on the individual market for $390 on a month-to-month basis. Her policy could be cancelled at any time. Does this mean that if Lisa gets sick and actually uses the insurance, her insurer could cancel the policy?

Later in 2013, Lisa received a letter saying that her individual policy was non-compliant with the provisions of the Affordable Care Act. The policy lacks minimum coverage standards as outlined by the ACA. They are called essential health benefits.

Lisa recently received notice that the premiums for this non-ACA-compliant policy are going up by 11 ½% to $440/month in July 2014. Insurers can continue to sell non-compliant plans up to 2016 in some cases.

Lisa has had no medical events that would test the limits of her policy but we know she could be in trouble is she ever did. The Commonwealth Fund reports. "Non-ACA-compliant plans are offered outside the ACA marketplaces and may seem attractive because they are cheaper. But, like many plans prior to the ACA, many leave people at risk of high medical bills because of hidden costs and limited coverage. These plans include short-term plans, association health plans, health care sharing ministries, and fixed indemnity plans."

This interview took place during the very rocky Oct. 2013 rollout of the Affordable Care Act’s website, Her final comment. “I do not hold President Obama personally responsible about the law or implementation. He got more done since any president since Roosevelt to help people.”


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