Medicaid provides a critical safety net for children in low-income families.
But many of those kids face a stark reality: Once they turn 19, they’ll be unlikely to receive coverage unless they are identified as “disabled.” That’s a high bar. Essentially, to meet that threshold, one must be in such bad shape that he or she can’t work at all.
When Medicaid was created in the mid-1960s, it was intended to cover low-income children, the disabled and those over 65 who needed long-term care. Medicaid wasn’t really intended for working-age adults who could work and pay for insurance themselves or with subsidies provided by their employer. But today, health care is no longer affordable for low-income people, even if they work.
The situation is especially tough for those born with chronic conditions that require costly, lifelong treatment.
Take the patient I treated in the 1980s, who was born with congenital heart disease. He made it through high school, but was clearly incapacitated. He looked for work, but was unable to find a job.
My patient, despite having no income, could not be covered by Medicaid unless he was declared disabled. He filled out the required disability questionnaire and answered the questions about heart disease symptoms honestly, but they were aimed at adult patients. For example, he acknowledged he didn’t have chest pain—which didn’t make his condition any less serious.
My patient died six days after receiving his denial from Medicaid that essentially said he wasn’t sick enough to qualify for coverage.
I have seen many people die because they were unable to access Medicaid coverage they desperately needed for treatment of manageable, chronic conditions.
These cases arise, ironically, because modern medicine is a victim of its own success. People born with conditions like congenital heart disease are living longer and thus need lifelong treatment. Today, there are more adults with congenital heart disease than children. We have the medical knowhow to take care of them, but too often, we lack public policies that ensure they’re able to access that treatment.
The obvious fix is to make affordable, adequate health insurance available to everyone—and it would not matter if someone had a chronic condition.
One way to do that is by putting patients with complicated conditions in a high-risk pool. High-risk pools should bundle these types of patients together and subsidize their costs.
Designing the structure of these plans is critical to their success. But so far, here in Texas, the high-risk pool is not appropriately funded. As a result, the premiums are high—about double what premiums would be for typical patients. The pool has a rule that prevents anyone with a pre-existing condition from getting coverage for 12 months. By definition, everyone applying for the pool has a pre-existing condition, so this seems a blatant way to reduce the expenses to the pool by reducing benefits. It’s no surprise that just 2.6 percent of eligible patients participate in this poorly designed system. A better system is the one in Maine, which is appropriately funded and offers affordable premiums.
We can also change the disability rules so they don’t exclude those who don’t fit the stereotype of “disabled.” A 20-year-old with congenital heart disease—or any number of chronic conditions—doesn’t look like a 60-year-old with the same diagnosis. He may be able to work and perform other activities relatively normally, if he has proper treatment. It doesn’t make sense that our Medicaid system often won’t cover the 20-year-old until he has deteriorated to the point that he is no longer able to work.
We should also develop job training programs specifically tailored to adults like my patient who have physical limitations but are capable of working. Some job programs are helping veterans, but they need to be broadened. These programs would pay for themselves because they allow people to become productive workers who are contributing to the economy. With an average cost of $1,200 per worker, these programs are relatively affordable.
We’ve developed a way for people with complicated conditions to live longer, but we haven’t developed a way to ensure they can afford the lifelong treatment they need. For those who are disabled, let’s not make their lives miserable with inappropriate denials. Let’s celebrate the adults who were born as sick children and today are capable of not just surviving, but thriving, with a little bit of help.
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