The envelope arrived in my mailbox a couple of weeks before Christmas. It had a green stripe at the top and in big bold letters alerted me that I needed to open it immediately. Inside the envelope, I found a letter letting me know that my health insurance under MassHealth—which is the Massachusetts Medicaid program—would be be changing drastically as of March 1.

In my particular case, I was informed MassHealth would no longer be partnering with the private insurer Neighborhood Health Plan, which had been providing the bulk of my coverage since I became a MassHealth patient in early 2015. Instead, I was being shuffled into something called an accountable care organization, or ACO, which is a group of doctors, hospitals, and other health care providers, who come together to coordinate one’s health care. I was also being reassigned to my former primary care provider (PCP) against my will.

This news sent a shock wave through my system.

I had recently left Harvard Vanguard after nearly eight years with them due to discriminatory behavior and their refusal to provide me with referrals to specialists outside their hospital system. None of their doctors offered the level of treatment my diagnoses demanded, while due to their high turnover of PCPs, I’d had four different ones in only four years’ time. Instead, I found a new PCP at a different institution who was open to helping me choose what providers would best serve my health needs. But since ACOs usually work by limiting one’s health care team to only those doctors designated under the organization’s umbrella of care, this meant I would be even worse off than before.

After spending many hours on the phone with MassHealth and conversing with various customer service representatives over the span of several weeks, I was finally placed into an alternative ACO that allowed me to stay with my current PCP and maintain some of my specialists. Nevertheless, I still stand to lose nearly half of my health care providers, including my acupuncturist, chiropractor, and osteopath—all of whom I have been seeing for years. While these services may sound like an indulgence, seeing them on a semiregular basis is what has restored my function and enabled me to work part time from home as a freelance writer. You see, I have a rare connective tissue disease known as Ehlers Danlos Syndrome and, related to that, extensive degenerative damage in my spine and hips, as well as nerve damage in one of my legs. This makes sitting, standing, and walking for any prolonged period excessively painful. But accessing these services can make all the difference to whether or not I can complete a deadline or go grocery shopping on a given day. Without them, my symptoms would worsen until they interfered completely with my ability to be a productive member of society or even complete routine tasks at home and in my community.

I am far from alone in this situation.

Approximately one million people were impacted by the March 1 changes to MassHealth—the majority of those in the program. Of these, at least 800,000 have been assigned into ACOs or Managed Care organizations (MCOs), while many others were assigned to something called the PCC, or Primary Care Clinician plan. In the PCC plan, one’s PCP coordinates all their care, and any providers they see have to be referred and take straight MassHealth. The problem here is that many health care providers who take insurances that MassHealth has partnered with—such as Neighborhood Health Plan, Tufts, etc.—do not take MassHealth due to its lower rate of compensation and its reputation for being slow in compensating medical claims.

I met some others in my boat when I attended an education forum for concerned and confused MassHealth patients held at the end of January at the NonProfit Center in Boston. The forum was sponsored by the collaborative group Disability Advocates Advancing our Healthcare Rights (DAAHR), which consists of local disability advocacy groups, including the Boston Center for Independent Living and the Disability Policy Consortium.

At the forum, many MassHealth representatives were present to directly answer questions and clarify information. Unfortunately, many of the responses they offered at the forum contradicted those that I have received from their customer service representatives on the phone both prior to and after attending the seminar. In particular, when I and several other attendees raised the point of losing specialists we’ve spent years cultivating relationships with and who can cater to our unique and rare health needs in ways that most doctors cannot, one MassHealth representative offered that those of us with special needs could request and be granted something called a “single case agreement.” She elaborated that such an agreement would enable us to see certain providers outside the ACO network of care we were being placed into.

Upon calling MassHealth to follow up in the weeks after, the representatives I spoke with had never even heard of such a thing as single case agreement. Further research on my part indicated that single case agreements were generally not offered through the PCC plan. And while certain ACO plans do offer the option of such an agreement, it is entirely at their discretion to reject a request, without much regulation or intervention by MassHealth. At least, this is what I have been told most recently. But since I have been told many contradictory things, it’s hard to to be sure of the truth. What’s clear is many MassHealth patients are being blindsided and saddled with the burden of figuring this out more or less on our own. And for those of us struggling with chronic pain and illness, our bandwidth is already very limited.

All of this begs the question: Why the changes to MassHealth? The primary answer seems to be that they will make the program more cost efficient. But the scant research conducted on ACOs indicates that they reap limited health care savings in the longer term. Furthermore, the Baker administration’s move to transition MassHealth to an ACO-dominant system is just one facet of a larger plan to shear the Medicaid program and kick many of its most vulnerable members off of it.

Despite Baker’s public rhetoric supporting the Affordable Care Act in response to repeated attempts in Washington to repeal the landmark health care law, his officials submitted a request to the federal government last October to roll back part of the Medicaid expansion in the Commonwealth. Specifically, the Baker administration is seeking to remove so-called “nondisabled” adults with incomes above 100 percent of the federal poverty level (FPL)—which would be above $12,140 for a single childless individual and $20,420 for a family of three—from Medicaid. Under the ACA, the income threshold to qualify for Medicaid was increased to 138 percent of the FPL—or $16,643 for individuals and $28,180 for a family of three—in the states that elected to adopt the expansion.

The problem here is that term “nondisabled” nonelderly adults is misleading, as it is solely referring to adhering to the Social Security Administration’s rigid definition of disability. According to the Kaiser Family Foundation, an estimated 3 in 10 nonelderly adults are dealing with some level of disability that compromises their ability to function and consistently work full time (even as many of them lack official recognition)—accounting for 42 percent of Medicaid’s overall expenditures. Here in the Commonwealth, about 14% of MassHealth members are adults under 65 “with disability,”–or 261,091 individuals between 21 and 64. But again, these are only those who have received formal designation of disability. As the Disability Policy Consortium recently noted regarding perceptions of what qualifies as disabled: “…many people with disabilities do not meet [the Social Security Administration’s] narrow definition…..There are many more people who do in fact need Medicaid because of pre-existing conditions and poverty…who will not have their needs met by private insurance.”

I am one of those people: Though I have been designated “medically frail” under MassHealth, I have been repeatedly denied formal disability status with them, though MassHealth acknowledged in my appeal of that denial that there is no doubt that my medical conditions are “severe” and seriously complicate my daily life. Even for those without major chronic illness or disability, being kicked off Medicaid could pose serious obstacles for lower-income folks in accessing preventive and routine medical care they and their children need to remain healthy.

Considering the hostility toward the ACA by the Trump administration, it seems fair to assume it will grant Baker’s request to roll back Medicaid expansion. While this would then require approval by the Democratic-dominated Massachusetts legislature, impending funding shortfalls for the Medicaid program could make it likely to happen, as the federal government currently funds up to 86 percent of the state’s Medicaid expansion. If the purse strings are cut on that aid, the state may be forced to downsize MassHealth if it can’t shore up funding elsewhere. This could spell doom for me and hundreds of thousands of others in the Bay State.

This article originally appeared in DigBoston



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