'I just live in fear every day': Vancouver woman struggles to manage on Social Security Disability Insurance benefits

Jun. 12—Carly Romero of Vancouver often faces an impossible choice: Should she spend her last few dollars on the co-pay for her medication or on gas to get to her medical appointments?

Romero's experience reflects that of many Clark County residents living on Social Security Disability Insurance benefits.

Romero, a 42-year-old single mother, receives disability benefits because she has a genetic connective tissue disorder. She said her payments fail to keep pace with the cost of housing, food, transportation and medical care. She said the safety net is frayed.

"It feels like we could just slip through at any moment," she said. "I just live in fear every day."

Never enough

Romero said her body often forgets how old she actually is. She feels like she's in her 60s, not her early 40s. She has a condition called Hypermobile Ehlers-Danlos Syndrome, which causes chronic pain and frequent sprains and dislocations in the limbs. She has undergone multiple surgeries to deal with its effects and is awaiting a second round of a double hip surgery.

For many years, Romero worked multiple jobs, primarily in janitorial work. The physically demanding job contributed to the wear and tear of her already deteriorating body. Yet, she continued working until she couldn't anymore. She started receiving disability benefits about two years ago.

During the period when she was unable to do janitorial work and waiting for her benefits to be approved, Romero said she delivered food for Uber Eats, donated plasma and collected cans — all physically demanding on her body, especially her shoulder, which was in need of surgery.

"Every day I was worried if I was going to make it or not. It was like: 'Am I going to lose our home? Are we going to have dinner tonight?' " she said.

Although Romero received a lump sum of back pay for the time she waited for her disability benefits to be approved, medical bills and other debt quickly depleted it.

"I really would go work part time, and I would love to, but my body doesn't cooperate well enough," she said.

She receives a monthly benefit of $1,412, but after her Medicare-related deductions, she has about $1,300 left. Romero also received about $550 in child support until her son's high school graduation this month.

Social Security recipients, including the more than 7 million people receiving disability benefits, received a 2.8 percent cost-of-living adjustment for 2026.

Medical care, electricity and utility costs are rising faster than the increase. For example, The Washington Post reported that the national average for rents climbed 3.8 percent in the past year and natural gas and electricity bills have risen 13.8 percent and 6.2 percent, respectively.

Romero said she's cut many corners while relying on disability benefits. Some months she doesn't pick up a prescription because she can't afford the co-pay. She said she has deliberately skipped utility bill payments because she knows that, at a certain point, the company will offer an assistance program.

"I have to skip or stagger around paying bills, which means sometimes they're late," Romero said. "I've lost my renter's insurance, my life insurance. I don't know what is next."

Her son plans to become Romero's live-in caregiver so he can get paid for the work and help out his mom. Romero has mixed feelings about this. She said she's tried to hide the family's financial situation from him as best as she could.

"He can see it, though. I know he's smarter than that," she said. "I just want him to focus on his future, not our bills."

Affordability or livability?

Walking through her home, Romero paused briefly at a small step separating her front hallway and living room to maneuver down with the help of a cane.

Romero and her son had to break the lease on their last apartment after seven months because the rent was too expensive and the unit was not accessible. Finding an apartment that fit Romero's budget but also her accessibility needs proved difficult. She found that she kept getting declined because of the requirement to pay nearly three times the rent for a deposit and have a good credit score. Romero looked at Americans with Disabilities Act-compliant units, but they were not a good fit for her and her teenage son because they were in complexes that cater to older adults.

Eventually, she found a private owner who was renting a townhouse in east Vancouver and was willing to work with her. The home wasn't accessible but was in her budget, and on a time crunch, Romero and her son moved in.

Her new home has stairs, with Romero's room on the second floor. The living room is also sunken, requiring Romero to step down or up to enter or exit the space. The driveway is also sloped and uneven in some areas.

"Despite my disabilities and not being able to use stairs, I had to find a compromise," she said. "This home is not safe for me. ... But I'll get used to it."

On top of that, Romero now owes about $5,000 for rent and breaking her lease at the former apartment.

This is a decision many disabled people face: affordability or livability?

A 2022 Urban Institute report found that many disabled people struggle not just to find housing they can afford, but homes that are safe for them. The report continues that many people living with disabilities will sacrifice their comfort for a home that is near their budget.

The research views this not only as a housing issue but also a health issue. Romero knows her new home could have an impact on her body. But despite the sacrifices she's made in the past two years, Romero said it never feels like enough.

"I feel like I'm honest — and I don't honestly say this very much — but I feel like I'm a failure," she said. "This system makes me feel like I'm failing as a parent and as a provider. I just don't think this system is built for people in my situation."

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