Forced to Divorce: Disabled Americans Must Choose Marriage or Health Care

Susan approached her husband, heart thumping, as he sat in their living room. Days earlier, on Valentine’s Day, she had been diagnosed with colon cancer. Now, her world was about to further unravel. Susan mustered up all her courage and told her husband that they needed to divorce.

Married for nearly three years, they were still in love and wanted to stay together. But to remain married would risk losing the health care Susan desperately needed. Diagnosed with rheumatoid arthritis at age 4, she has lived with chronic pain for as long as she can remember. Susan struggles to get around without a cane or power chair during flare-ups. She didn’t have private insurance at the time of her diagnosis, so Medicaid was critical for her to get the care she needed to manage her disability.

Her husband worked as a roofer and earned $12 an hour. His seasonal income fluctuations left Susan hovering near the Medicaid eligibility cap, which came out to around $20,600 annually at the time, in 2007. She already had briefly lost coverage during their marriage because her eligibility was based on household income. The cancer diagnosis was the tipping point. Susan’s husband had recently switched companies and earned a pay increase to $14 an hour. Warmer spring months would bring additional construction work. But more income wasn’t necessarily good news. Instead, it surfaced the nagging anxiety that Susan could lose Medicaid eligibility again, just when her medical bills were about to skyrocket.

Divorce, they decided, would eliminate the month-to-month possibility of losing coverage — and the fear that came with it.

Susan’s part of a growing number of America’s 61 million people with disabilities facing acute trade-offs between health care and marriage. Couples with disabilities historically have faced greater barriers to marriage. But an OZY investigation reveals a rapidly widening disparity in marriage rates between those with and without disabilities in the years since Susan’s divorce, spawned by outdated eligibility thresholds and a convoluted web of health care programs that many find difficult to navigate.

Between 2009 and 2018, nearly 1.1 million Americans with disabilities got divorced, almost twice the number — 593,000 — that got married, U.S. Census Bureau data show. In the same period, 1.5 million people without disabilities divorced — less than a third of the 5.2 million who got married. This “divorce gap” raises the question of how many more like Susan are ending happy marriages to secure health care.

Experts say the system has been stacked against marriage for people with disabilities for decades, stretching back to the eugenics movement. Between the 1920s and ‘70s, more than 60,000 people with disabilities were forcibly sterilized to gradually rid the human gene pool of traits that were then considered undesirable. The 1927 Supreme Court decision upholding sterilization, Buck v. Bell, was never formally overturned. In states such as Washington and Michigan, courts continue to accept requests from guardians of people with disabilities for their sterilization.

But across the country, couples with disabilities face the added burden of complex regulations that critics say are out of step with the times. Supplemental Security Income (SSI), a federal program meant for Americans with disabilities with limited resources or over age 65, is only available to couples with $3,000 or less in assets. This cap has remained in place since 1989 — although the equivalent of $3,000 then would be more than $6,000 in 2019. And for a couple with disabilities, monthly SSI cash benefits are reduced by 25 percent upon marriage to account for the efficiency of shared expenses like housing, according to the Office of the Chief Actuary.

Individuals who qualify for the Disabled Adult Child program, which is linked to their parents’ work history, lose benefits upon marriage. What’s more, the Office of Inspector General and Social Security Administration (SSA) can determine that a cohabiting couple is “holding out to the community as though they are married” — which would strip them of the benefits they sacrificed marriage to protect. “When two people consider themselves to be married and convey that to the community, they are considered married for SSI purposes whether they are legally married or not,” says Nicole Tiggemann, a public affairs specialist at the SSA.

Some states are trying to avoid the marriage-or-health-care dilemma. Certain ones have raised Medicaid income and asset caps for people with disabilities who are able to work. Some offer specific buy-in programs or assess eligibility based on the applicant’s income alone. But even with those higher thresholds, the annual eligibility caps for workers with disabilities in 30 out of 50 states are below $34,489, America’s per capita income, according to the Census Bureau’s latest available data from 2017. Then there’s the legal morass of complex regulations that advocates say are poorly communicated by the responsible agencies.

In effect, all of this means that many Americans with disabilities must pick only two out of three: marriage, economic security and comprehensive health coverage. “As we see amazing strides in marriage equality, disabled people are still being excluded from the conversation,” says Robyn Powell of Brandeis University’s Lurie Institute for Disability Policy.

Susan, who is now in her 50s and whose name has been changed to protect her identity, recalls listening to a doctor tell her parents when she was 15 that she’d never marry or give them grandchildren. He spoke like she wasn’t in the room, she says. Not long after, she met the man who would much later become her husband. “I didn’t think he would ever like me, because I didn’t think any boys liked me,” Susan says. He was the neighborhood paperboy, her first boyfriend and her first kiss.

She never expected to bump into him 29 years later, sitting on a bench at an amusement park, as her two sons rode a roller coaster. Hours after they parted ways, he called to ask her on a date. They sat in a park together, watching her sons and his daughters play in the sun. In 2004, they married at a local church on a windy October day. He helped Susan climb up seven steps to reach the altar, her tennis shoes concealed underneath her white wedding gown.

Susan knew then that her partner’s income and assets meant she could lose Medicaid and SSI checks she’d been getting since age 18. But her health had felt manageable back then. She was willing to make that trade-off for marriage. Cancer, however, changed the equation.

Following same-sex marriage legalization in 2015, Rabia Belt, a legal historian at Stanford Law School, called marriage for people with disabilities “the last marriage equality frontier.” Four years later, those regulatory barriers still haven’t been framed as a civil rights issue, says Dom Evans, a filmmaker, public speaker and activist who is multiply disabled and transgender.

“There’s a bubble around the disabled community,” Evans says. “We don’t often get to talk for ourselves.”

Look forward to Part II in our next article

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