Jenn Malatesta

When I married my husband 25 years ago, I immediately lost my health coverage under Medicaid. The small salary he made as an aide at a nursing home put us over the program’s income limit. Medicaid is the only insurance I have ever had that paid for “custodial care,” which is defined on Medicare.gov as “help with basic personal tasks of everyday life, sometimes called activities of daily living.” This meant I no longer had Personal Care Attendants (PCAs) – the people that got me out of bed, bathed me, helped me to the toilet, dressed me, groomed me, prepared my meals, and otherwise helped maintain my living area. I believe most people have been under the mistaken assumption that my husband has been my only caregiver throughout our marriage because we viewed it as some enduring symbol of our love. Honestly, we have had no other choice. It was either this, or pay people out of pocket. And our pockets have never been deep enough to pay PCAs for the level of care I need. This is a well-known consequence of “the marriage penalty” to my friends with physical disabilities. For this reason, many people I know have eschewed traditional legal marriage, but live for all intents and purposes as married. We just did not feel comfortable doing this and frankly have been paying for this decision ever since.

So what does all this have to do with the Trump presidency? For me, quite a bit. During Obama’s terms in the White House, steps toward health insurance reform had given me hope that things were going to get better, and that maybe someday the act of getting out of bed in the morning, getting dressed and having a way to prepare meals would be considered “medically necessary.” Trump’s election, and the subsequent steps by Congress to dismantle Obamacare, instead portends a complete reversal of any headway we have made.

One important portion of the Affordable Care Act deals with pre-existing conditions. According to HHS.gov, “Under the Affordable Care Act (ACA), health insurance companies can’t refuse to cover you or charge you more just because you have a ‘pre-existing condition’ — that is, a health problem you had before the date that new health coverage starts.” Before this went into effect on January 1, 2014, my husband’s employers’ insurance companies flat-out refused to cover me, referring to me as “uninsurable.” For this reason, before I re-entered the workforce, I was on Medicare, while we paid family premiums through my husband’s employer for him and our two daughters. In fact, I only have health insurance now because of the monstrous size of the company where I work. Removal of the pre-existing condition clause would severely limit my employment options. I can continue working at my present dead-end job, find a new job at an equally large company, or I can retire on disability again and qualify for Medicare. This of course is assuming my current insurers won’t jump at the chance to dump everyone from their roles with complex medical histories when the ACA is repealed. (And, no, neither private insurance nor Medicare covers PCAs. Otherwise, I’d have them.) Trump claims he may keep this one provision of Obamacare. But first, the operative word there is “may,” and second, it shows he has no real clue how insurance companies operate. If people are allowed to sign up for insurance with no consequence only after they suffer a catastrophic illness, thereby “gaming the system,” insurance premiums will skyrocket across the board for everyone.

Secondly, Congress has considered allowing insurance companies to reinstate lifetime caps. A new treatment has just been approved by the FDA for my previously untreatable medical condition. But the cost is considerable, totaling around a million dollars for the first two years alone. And I will need to continue with this treatment for the rest of my life to avoid regressing to my previous level of functioning. Not even considering the medication I take for my other illnesses, the cost of durable medical equipment, like my heavily modified electric wheelchair that I require to be a working, tax-paying citizen, and any other health crises that will inevitably crop up, I will easily blow through even the most generous lifetime caps in a handful of years. I find it painfully ironic that the hope of regaining some minutia of physical strength was born last month, and less than three weeks later, this hope is in danger of being snatched away because looming lifetime caps will make it effectively out of reach except for the very wealthy.

This last part does not affect me now, but it could affect me in the future. And it certainly will negatively affect a majority of my friends with disabilities. Trump has proposed switching Medicaid to a block-grant program, meaning each state will receive set annual funding from the federal government to cover Medicaid programs as they see fit. This, coupled with the proposed slashing of Medicaid funding, means even less services will be covered by Medicaid, and a hodgepodge will exist between the states of what will and won’t be covered. For people with disabilities, who rely on Medicaid PCA services to live their daily lives, this lack of funding will make a bad situation even worse. The number of PCA hours that can be billed to Medicaid is already strictly limited, causing many family members to provide uncompensated care for loved ones on Medicaid, often around the clock. I have heard horror stories in the disability community about people literally dying because their overtaxed family members have slept through sounding ventilator alarms. The proposed budget cuts will only further limit access to home health care and force people into nursing homes, which ironically end up costing taxpayers more. And as stated above, Medicaid is the one and only option for insurance-funded PCAs. If something, God forbid, should ever happen to my husband before I shuffle off this mortal coil, I will first need to quit my job and spend myself into financial destitution to qualify for Medicaid, and then I still may not be able to secure enough PCA hours to avoid institutionalization. All this does not even scratch the surface of affording durable medical equipment, prescription drugs, and medical treatments that are going to be covered by lesser and lesser extents.

This is not me catastrophizing. These are trends already underway that will be greatly accelerated under Trump and the GOP’s proposed plans.

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