Lori Long met her partner, Mark Contreras, when they were both in their 40s, and they soon knew they wanted to spend their lives together. As they planned their wedding, Long made a startling discovery.

If she got married, she would lose the disability benefits she's had since she was a childs. Long lives with ankylosing spondylitis, an autoimmune condition that can impair mobility.

“We felt we were forced into this decision not to marry,” the 52-year-old from Salinas, California, tells TODAY.com. “I not only will lose the monthly stipend, I will also lose my health care insurance.”

Long is not alone. Many disabled people realize that if they marry, they will lose the benefits and insurance that allow them to live independently.

“We were shocked. Mark and I were three months into planning,” Long says. “When we found out, we had to cancel.”

Disability benefits and marriage

There are several programs that provide benefits to disabled people. Two of them — Adult Disabled Children (DAC) and Supplement Security Income (SSI) — come with a marriage penalty, meaning that getting married reduces or eliminates their benefits, says Rebecca Vallas, the CEO of National Academy of Social Insurance.

People considered adult disabled children “receive Social security benefits on their parents’ work record,” Vallas tells TODAY.com. “They have to have a disabling disability that began before age 22.”

The policies regulating disabled adult children only allow for marriage if someone marries another adult disabled child or someone receiving Social Security because of disability or retirement, Vallas says. If they marry someone who does not receive DAC or SSI, they lose their benefits. Long receives the Adult Disabled Children benefit.

People receiving SSI also face penalties after marrying.

“(SSI) is the program that was put in place as the backstop for people who do not have enough of a work record to get benefits through Social Security (Disability Insurance),” Vallas says.

Social Security Disability Insurance (SSDI) is linked to a person’s employment history, meaning that if a person works for years and then becomes disabled, they qualify for SSDI. People who receive SSI have limited or no work history and restricted income and assets. SSI also comes with “really serious marriage penalties and they’re more complex,” Vallas says.

“Say you’re an eligible SSI beneficiary, you’re getting your benefits, and say you want to marry somebody who also gets SSI — you’re both going to see your benefits cut,” Vallas says. “It’s really, really heartbreaking stuff. People ... literally can’t get married because they’re going to see their benefits cut by a quarter each.”

SSI also prevents marriage because of an asset limit tied to it. To receive SSI, people cannot have more than $2,000 in the bank, “an amount that actually hasn’t been updated since 1984 even for inflation,” Vallas says. The asset limit for a couple is $3,000, she adds. What’s more, if a person receiving SSI marries a person not receiving SSI, their partner’s income and assets are considered part of their income.

“People outright lose their benefits,” Vallas says. “They marry someone who maybe is even moderately working class and (has) some level of income and even some moderate level of assets … all of a sudden now all that counts against SSI rules.”

In addition to SSI and DAC, people receiving Medicaid might lose it, as well, if they get married. This is complicated because each state has its own set of rules about who qualifies for the health insurance, Vallas says. Many people with disabilities need Medicaid because it offers them health care services they cannot receive with private insurance, says Ayesha Elaine Lewis.

“If you’ve been in a car accident and you have spinal injuries, you may need someone to feed you. Most insurances would not provide that coverage,” Lewis, a staff attorney at the Disability Rights Education & Defense Fund, tells TODAY.com. “These are the things Medicaid can. And it’s those services, in many ways, in many instances that allows people to not be in a nursing home. It’s what allows people to live independently to a certain extent.”

More than 9 million Americans receive some form of disability benefits, according to the Social Security Administration, and “because of the many different marriage penalties, every single one of them is impacted by these rules,” Lewis says.

The fear of losing benefits because of marriage takes an emotional toll on people, too.

“There’s a huge chilling effect,” Vallas says. “The message is that there isn’t marriage equality for disabled people in the United States.”

The restrictions exist because the policies on disability benefits haven’t been updated for decades, Vallas notes.

“This gets us into broader conversations about the way our disability benefit programs are structured,” she says. “But there’s a lot of paternalism and ableism enshrined in these policies that apply to people who receive these benefits.”

While it might seem bleak for disabled people hoping to marry, there is a bipartisan bill that has broad support to address the SSI asset limits. This could make marriage accessible for more people, Vallas explains. Senators Sherrod Brown, Bill Cassidy and James Lankford sponsored the legislation called the SSI Savings Penalty Elimination Act.

“That bill would update SSI asset limits to $10,000 for each individual and $20,000 for a couple,” she says. “That bill has actually been getting attention in the past couple of years because of the important steps it would take toward addressing these marriage penalties.”

She says religious groups and disability organizations all support the bill.

“(Lankford) gave a speech about how much he loves his wife and how important it was to him to get to marry her and how everyone else deserves that same right,” Vallas says. “I find that to be a pretty powerful message.”

How marriage is unattainable for some

Growing up, Long was diagnosed with ankylosing spondylitis, an autoimmune condition that causes inflammation in the joints and the spine, according to the National Institute of Arthritis and Musculoskeletal and Skin Diseases. It causes pain and stiffness as people lose flexibility in their spine. People with it often develop problems with their gut, skin conditions, eye disease and even bladder problems.

“It affects my daily life and daily activities,” Long says.

Lori and Mark (Courtesy Lori Long)

After she was diagnosed with it, her father’s health insurance company dropped her. (Long notes that this occurred before it was illegal to do so.) A social worker suggested that her family apply for disability benefits so she could qualify for Medicaid insurance. This move made Long an adult disabled child.

“I had no idea they had a different set of rules for people who were disabled young and people who were disabled after the age of 22,” Long says.

So few people understand the restrictions on marriage that when Long called her local social security office to check if she would lose her benefits, the person who answered the phone inaccurately reassured her.

“They told me, ‘Oh honey, of course you can get married. You’re not going to suddenly become not disabled when you get married,’” Long recalls.

After chatting with a friend, she called back and asked for a specialist in the marriage rules.

“She said, ‘Oh I’m so sorry. They must have ... not realized your status. If it’s regular (Social Security Disability Insurance), you can marry whoever you want and keep your disability insurance and health care,’” Long says. “But if you’re a disabled adult child on a parent’s work record, you’re limited as to who you can marry.”

Long told Contreras it would be OK if he wanted to end the relationship.

“I offered him, at the time, a way out. I knew he wanted to be married and have the lifestyle and everything that comes with marriage,” Long says. “He just said, ‘Don’t be ridiculous.’”

Matt Budzak was born with multiple pterygium syndrome, which can cause limb deformities, and also has scoliosis.

“My legs got the worst of it, and I was never able to walk or stand on my own because my legs were formed in like a bent position,” the 31-year-old from Puyallup, Washington, tells TODAY.com. “When I was about 12 years old, I had to make the decision to have them amputated.”

That choice helped him to become more mobile “in a very positive way," he recalls.

Matt Budzak (Courtesy Matt Budzak)

“People say, ‘Oh, when you lose a limb, that’s tragic because it’s just a horrible thing,’” he says. “For me, it was actually the opposite because that allowed me to move a lot more.” While Budzak receives SSI and Medicaid, he also works at the local Walmart. As a single disabled man, he finds dating difficult, especially considering that marriage could lead to him losing his benefits.

“We’re talking about real people in their real lives, and there’s nothing more powerful than their love,” he says.

Speaking up

After Long learned she couldn’t get married and retain her benefits, she reached out to her local congressperson, Rep. Jimmy Panetta. He introduced legislation in 2023 called the Marriage Equality for Disabled Adults Act to Congress. If passed, it would allow disabled adult children, like Long, to marry and still receive benefits and health care. But it has stalled.

“It was just reintroduced recently,” Long says. “We’ve been stuck in committee for over a year.”

In September 2023, Long helped organize a rally — a mass commitment ceremony — that took place in Washington, D.C. Participants called attention to the restrictions disabled people face and advocated for marriage equality.

“I said, ‘We need to start having protests out in front of the Capitol and have a mock ceremony,’” Long says. “It was a great ceremony. We had a lot of wonderful people there.”

Long notes that she and Contreras are Catholic, and without changes, they cannot practice the sacrament of marriage.

“We’re really a pretty ordinary couple. We met. We fell in love. We had an amazing courtship, and Mark is such a wonderful man,” Long says. “We just want to be married and enjoy a married life together as people in love want to do without me losing the right to live.”

Lori and Mark (Courtesy Lori Long)

Budzak wasn’t able to travel to the event. But he feels glad that Long and so many others are speaking up about the barriers to marriage for disabled people.

“Even though I am currently single, I definitely 100% support anybody wants to be married and not have their SSI be affected,” he says. “That has to stop. Still to this day it blows my mind. It’s not OK.”