Michigan Disability Resistance

If there was only one way to change our lives, it would have already happened....

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There is more than one way to do disability activism. This should be obvious, but needs repeating.

There are plenty of internal arguments inside the disability community, about race, gender, sexual orientation, age, social class, and disability type, not to mention several vastly different philosophies of disability itself. These disagreements can be upsetting, but at least they reflect important differences with real-life consequences. And when we are at our best, we come out of these arguments wiser and more humane.

Sadly, over the last year or so, a more annoying and wasteful conflict has emerged over what counts as “real” disability activism.

The main divide seems to be between activists who mainly work online, and those who participate in events and actions in person. Some of us choose one approach or the other because we like it, or simply because we are better at it. Others of us must choose to do what our own disabilities and circumstances allow. So it is a also a clash between people whose disabilities and supports allow them to travel and undertake tiring activities, and those whose disabilities and relative lack of resources make “in person” activities difficult or impossible. This, in turn, intensifies the ongoing debate between different views of disability itself. Is disability an adaptable social condition, or is there still an irreducible medical component that can’t always be shrugged off?

One side is quick to judge others for a supposed lack of seriousness or commitment. The other side is quick to take offense when certain kinds of activism are praised, and others ignored or disparaged. Shade is thrown. Motives are assumed.

But such debates aren’t entirely pointless. Online activism can be fleeting and superficial, and it’s sometimes hard to know for sure how effective it is. Meanwhile, traditional political action can be self-indulgent. It’s high on spectacle and empowerment, but sometimes the drama of live protest overshadows its goal. But what’s frustrating is that the disability community should be able to resolve this kind of conflict better than anyone.

Here are 20 different ways you can be a disability activist:

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May 4th marks the one-year anniversary of the U.S. House of Representatives passing the American Health Care Act (AHCA), a bill that would have put millions of Americans at risk of losing affordable health care. The bill would have ended Medicaid as we know it, eliminated the insurance protections of the Affordable Care Act (ACA), raised premiums on older adults, and undermined Medicare. While AHCA ultimately failed to become law, efforts to unravel the ACA have continued.

Late last year, Congress passed a tax bill that included a provision eliminating the ACA’s individual mandate, which was widely seen as the linchpin for the ACA’s individual market. In addition, the Administration has taken several steps to reduce spending to support the ACA, including stopping cost-sharing reduction (CSR) payments that helped reduce premiums for consumers, ending most marketing and advertising for ACA markets, and changing ACA enrollment rules to make plans harder to buy and keep.

We are starting to see the impact of these changes. This week, the Commonwealth Fund’s Affordable Care Act Tracking Survey showed recent coverage declines among 19-to-64-year-olds. The survey’s focus is on adults who gained coverage through the ACA’s marketplaces and Medicaid.

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Last week, several federal agencies issued guidance to enhance the enforcement of the federal parity law, which requires that insurance coverage of mental health and addiction services be equal to medical/surgical health services. The new guidance is the result of requirements included in the 21st Century Cures Act to improve behavioral health coverage. The guidance released by Health and Human Services (HHS), Departments of Labor and Treasury is intended to help employers and insurers implement parity, improve the coordination of parity enforcement between the agencies and to provide Congress with recommendations for improving parity compliance moving forward.

Federal agencies have released the following resources to improve enforcement of the Mental Health Parity and Addiction Equity Act (MHPAEA) of 2008, as required by the 21st Century Cures Act:

• Proposed NQTL FAQs: This document includes proposed guidance from the Department of Labor regarding nonquantitative treatment limitations (NQTLs) and disclosure requirements in connection with the Mental Health Parity and Addiction Equity Act (MHPAEA). NQTLs are non-numerical limits on the scope or duration of treatment benefits, such as preauthorization requirements. Public comments are invited and can be submitted until June 22, 2018 to E-OHPSCA-FAQ39@dol.gov.
• DOL 2018 Report to Congress: Pathway to Full Parity: This report summarizes DOL’s activities to further parity implementation and provides a roadmap of DOL vision for the future to minimize parity violations.
• FY2017 MHPAEA Enforcement Fact Sheet: This fact sheet summarizes the parity enforcement activities of the Employee Benefits Security Administration (EBSA), which relies on its 400 investigators to review health plans for compliance with MHPAEA.
• 2018 MHPAEA Self-Compliance Tool: The goal of this self-compliance tool is to help group health plans, plan sponsors, plan administrators, group and individual market health insurance issuers, state regulators and other parties determine whether a group health plan or health insurance issuer complies with MHPAEA.
• Revised Draft MHPAEA Disclosure Template (issued April 23, 2018): This is a tool to help consumers request information from their employer-sponsored health plan or insurer regarding coverage limitations that may affect their access to mental health or substance use disorder benefits.
• HHS Mental Health and Substance Use Disorder Action Plan: The Action Plan highlights recent activities and planned actions from HHS, DOL and the Treasury Department related to ongoing implementation of MHPAEA based comments from a public listening session held in July 2017.

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A century or two ago, the word community “seemed to connote a specific group of people, from a particular patch of earth, who knew and judged and kept an eye on one another, who shared habits and history and memories, and could at times be persuaded to act as a whole on behalf of a part.” In contrast, the word has now become fashionable to describe what are really networks, as in the “business community”—”people with common interests [but] not common values, history, or memory.”

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Those of us who have spent too much time in hospitals tend to think of insurance companies as cold and heartless, but when I got a call last August from Carolyn M, a former nurse employed as a case manager for my Medicare Advantage plan, something clicked.

Her call was a routine check to see how I was doing following a three-day hospital stay for an epididymitis infection last summer. At the time I was busy farming and wheeling about as well as working my editorial job. Carolyn and I had had no prior contact. But by the end of that first call, she knew not only that I lived on a farm, but also my age, marital status, history as a para and countless other medical facts about me. I also told her I wrote about medical topics and was editor of New Mobility magazine.

She reciprocated by telling me she had more than 30 years nursing experience, having worked all over the nation as a military wife. Her experience was broad — cardiology, poor people, teens with psychological problems, people with SCI, people in hospice who were dying. She had also been a nurse trainer. When I heard of her SCI experience, I knew she would understand my situation, wherever it led.

And three months later it led to an unexpected and frightening place: in bed with a stage IV non-healing pressure sore that required flap surgery and six more months in bed. The underlying bone infection could do me in.