(This article was written for my capstone project during my final semester at Emerson College. It was completed in December 2019. I intend to report further and pitch an edited version of this article as part of a series on love, disability, and marriage.)
John Jobst and Sandra Lee got married in October 1970. Both born with cerebral palsy, a lifelong motor disability, they had been accepted into benefits programs after being found permanently unable to work. The benefits were the only income they had.
But one month later, John would find out his benefits had been terminated because he got married. Even after he and Sandra later divorced, he could never receive them again.
“Disabled adult children,” as the Social Security Administration called them until recently, could apply to receive benefits via their parent’s work record once they turned 18. John was 25 when his father died in 1956 — only a few months after this provision was signed into law after decades of controversy and debate. But the law was clear that if Jobst got married — no matter the circumstances — the government would totally and permanently end those benefits.
Two years later, Congress signed a separate amendment that allowed two people both in the DAC program to marry each other and keep those benefits. But when Jobst married his wife, she was receiving benefits on a state level, since her mother didn’t have enough recent work history to insure her daughter through the SSA.
After unsuccessfully appealing the Social Security Administration, Jobst sued all the way to the Supreme Court, claiming this violated the due process clause of the 5th Amendment. But when the case reached the Supreme Court in 1977, the justices unanimously ruled against him. The general rule that DACs cannot get married was said to be reasonable, since a married DAC recipient would be “less likely than an unmarried person to be dependent on his parents for support,” and the specific circumstances of the Jobsts could be addressed by Congress.
Decades later, despite multiple high-profile pushes for new legislation, these rules have largely gone unaddressed. People with disabilities face multiple pervasive barriers to marriage that surround their access to benefits programs, no matter if they’ve been disabled for their entire life or only became so recently.
In the most concrete example of limited access to marriage, if someone has been determined to be permanently disabled since birth, they can receive lifelong support from the Social Security Administration once they turn 18. But if that person ever gets married to someone who isn’t disabled, or to someone disabled who isn’t eligible for the same federal program, their benefits will permanently be lost.
“In many ways, health care and income supports for folks with disabilities have a lot of Byzantine rules,” said Bethany Lily, Director of Income Policy at The Arc, an organization that advocates for people with intellectual and developmental disabilities. “And many of them penalize people for wanting to get married.”
These provisions have been established in law for decades, and are well-known to people living with disabilities. But criticism of the “marriage penalties” has gained a higher public profile as SSA is proposing significantly higher scrutiny and frequent review periods on some people already receiving disability benefits, which if passed would place 4.4 million people in a position of needing to prove they are still sufficiently disabled every two years.
The Trump administration claims the proposed rule would save money, largely through removing people from benefits programs: the increased administrative costs of $1.8 billion are set off by net decreases of old age, survivors, and disability insurance benefits payouts by an estimated $2 billion.
“I have serious concerns about this proposed rule,” said Sen. Bob Casey in a statement to the Philadelphia Inquirer, calling it “yet another attempt by the Trump administration to make it more difficult for people with disabilities to receive benefits.”
People with disabilities can receive benefits from a number of federal and state-level programs depending on their income and the duration of their disability. Some of these programs are means-tested, where eligibility is determined by income and assets. Others are based on work records and are inaccessible to people who have been disabled since birth. Experts say the process of applying for and receiving these benefits as difficult at best, with some recipients describing the process as taking years of submitting paperwork and jumping through hoops. Even in cases where applicants are theoretically allowed to become married, that access is practically limited.
Crucially, Medicaid is often tied directly to a person’s ability to receive benefits from the Social Security Administration, despite being administered on a state level. While it isn’t designed specifically for people with disabilities, many use it because it offers comprehensive health insurance they would otherwise be unable to access or afford with their particular health and assistive needs.
“I would say the vast majority of these disability services aren’t available via private insurance,” said Lily. “Medicaid is the only provider.”
In most states, being eligible for Supplemental Security Income automatically grants or makes a person eligible for Medicaid. But because of this, losing benefits on a federal level can often start a chain reaction that leaves a person’s livelihood and access to necessary medical care in jeopardy.
The Social Security Administration’s most recent numbers estimates there are more than 68 million people with disabilities on federal benefits programs between age 18 and 64. 4 million of those people only receive Supplemental Security Income, or SSI. Despite its name, Social Security Disability Insurance is claimed largely by people with some kind of work record and taxpaying record who later become disabled, and not people who have been disabled all their lives.
The Social Security Act established in 1935 did not include disability insurance or benefits of any kind: coming out of the Great Depression, disability insurance was seen as too costly and too much of an administrative burden, and was largely handled by private insurance companies despite the policies generating huge losses.
The first primitive version of disability benefits was established in the wake of World War II for returning soldiers and their surviving families. After this, a committee was established in 1948 to weigh the possibility of establishing a Social Security Disability program, but was quickly plagued with concerns that cash benefits would deter rehabilitation, and that people, particularly women, would fake ailments that were “difficult to disprove.”
Finally, after primitive versions were routinely opposed by the American Medical Association, a benefits program was enacted in 1956 for “disabled adult children” of retired or deceased able-bodied workers, and for disabled workers over 50. From there, the program quickly expanded to cover children and spouses of disabled workers, eliminated the requirement to be over 50, and refined the government’s definition of disability to expand it to more disabled workers. But the SSI program that exists today was not signed into law until 1972, and not enacted until two years after that.
The number of people receiving disability benefits has steadily increased over time, more than doubling from the 70s to the 80s. After an attitude of expanding the program to as many people as possible, key officials in the Carter and Reagan administration began to feel it was in “disarray,” and in the following years enacted amendments that sought to bring a much greater level of scrutiny on people in the program.
Most notably, it established that the government would periodically review people receiving benefits to determine if they were still “disabled enough” to qualify for the programs. Much of the specific language of this legislation has gone unchanged since at the 70s and 80s including the provision preventing DAC recipients from marrying, the specifics and frequency of the review periods, and the rate of couples’ benefits and individual benefits under SSI.
“We had a very different concept of what a disability was when all of these laws were written,” said Lily. The SSI provision of the law was last amended in the 1970s, before the Americans with Disabilities Act was signed into law in 1990. The public perception of not just people with disabilities, but the institution of marriage itself was far different. When discussing John Jobst’s case, for example, the Supreme Court Justices remarked on not only how unlikely it was for a disabled person to marry someone who wasn’t, but on how husbands could be said to rely domestically on their wives.
Like the issue of marriage in the past, “any fix or any change that we would want to see towards seeing this,” said Lily, “would have to reframe how we think about people with disabilities.”
Jobst is not the only person who ever challenged these laws. In multiple significant rulings, from district courts to the Supreme Court, judges have ruled that the laws surrounding how the country treats people with disabilities should be changed by Congress. But Congress has largely stalled on this issue, with significant amendments to the Social Security Act passing rarely, if at all. Most are centered around further restricting access to benefits or increasing review periods, and fewer seek to update the bill to expand the ability of its recipients to marry.
Beyond that, the Act and its provisions are famously complicated. Professor Robert Rains, who founded Penn State’s Disability Law Clinic more than 30 years ago, has called the ins and outs of the Social Security Act “byzantine” in his writings. Matthew Cortland, a disabled, chronically ill lawyer who relies on SSI and Medicaid for treatment, says it further limits access to care for people who cannot afford legal counsel.
“I am, and I cannot stress this enough, an excellent, highly competent, on-the-ground healthcare lawyer,” he wrote on Twitter. “If we’d had to pay an attorney for the things we’ve done? It would have cost tens of thousands of dollars.”
And Lily, although she works for an organization that describes itself as the largest community-based disability advocacy group in the country, sees the law as cumbersome at the best of times.
“Oftentimes, I have had folks tell me that they feel like they need a lawyer to work through the system,” Lily said. “And I look at these systems and say, even as a lawyer, I don’t know that I can work through these systems. It places a huge burden on an individual. It places a huge burden on a family who wants to help.”
When Claire Collier became pregnant for the first time, like many mothers, she decided she would stay at home to raise her children while they were young. She eventually had three children, and when her youngest was 3 years old in 2000, she began working again as a teacher’s aid.
Then she was diagnosed with ALS three years later.
The Social Security Administration provides three distinct programs for people with disabilities, with different features and requirements for each. If someone is disabled but has worked enough earlier in life to earn credits through taxes taken out of their paycheck, they become eligible for Social Security Disability Insurance. Supplemental Security Income, on the other hand, is a program used by people with disabilities who have limited work history and extremely low income. And unlike SSDI, it is a means-tested program, meaning any person on SSI can never have more than two thousand dollars — in money and certain assets — at one time.
But when Collier applied for SSDI based on her work history before becoming a mother, she was denied. Because she stayed at home to raise her children before she could have known she would develop ALS, Collier did not satisfy a provision the SSA calls the 20-40 rule.
To qualify for disability insurance at her age, she must have worked the equivalent of 5 out of the previous 10 years. Collier couldn’t qualify for SSDI because of her time as a stay-at-home mom. When determining if her assets qualified her for SSI, her husband’s income and resources were “deemed” to her and counted towards the limit.
“If you are on SSI, getting a small income, a very, very modest income support, and you have access to Medicaid,” said Lily, “and were you to get married to someone who doesn’t have a disability, or has a disability and is working a regular job with employer provided insurance? The rules of the SSI program are based on financial eligibility, and so you would lose access to SSI for getting married because your spouse’s assets and income would be counted against you.”
While the maximum limits do increase for couples, it is usually by a nominal amount. For SSI, couples are allowed maximum assets of $3,000, only one thousand dollars more than an individual. If someone falls into the case where they haven’t earned enough work credits to be eligible for SSDI, but their partner makes enough money to disqualify them from SSI — like Claire Collier — that person has little recourse.
Collier was unable to qualify for SSDI because of her period as a stay-at-home mom, and the income of her husband disqualified her from SSI and Medicaid. Because her insurance plan didn’t completely cover her extensive treatment and care, including 24 hour in-home health care and massage therapy, her medical expenses skyrocketed to more than $500,000. She needed a motorized chair to move around her house and could no longer go up the stairs in her house.
“I think when I was first diagnosed, I remember Bill [my husband] saying, you know, `Why you? Why you?’”, Collier recalled in an interview on MSNBC. “And I said I–I guess this is my journey.”
As she faced a worsening prognosis and increasing medical debt, Collier challenged the 20-40 rule in court in 2007. She argued the provision discriminated against women, who are much more likely to lose coverage because of this rule than men due to societal expectations surrounding childcare.
The US Second Circuit Court of Appeals sympathized with Collier’s situation, calling it a “matter of human tragedy,” But it ruled that because Congress had not knowingly and intentionally made the rule to discriminate against women, it could not call it unconstitutional.
Some Congressional representatives were also listening to Collier’s story, meeting with her to address changing the law. “They were very receptive and pulling for us,” she said. “And they just felt everything was so unjust.”
A bill named after Collier was introduced in the House that same year, and would have created an exception to the 20-40 rule for people with terminal illnesses like ALS. It never made it past committee, and Collier died of the disease two years later.
Her case illustrates how multiple provisions of the law, established to prevent healthy people from relying on federal benefits, further work in tandem to systematically deny people with disabilities and significant care needs the ability to marry, even if the law does not explicitly prevent it.
This impacts not only people who unexpectedly become disabled later in life, but people whose conditions are lifelong and people who have no chance of recovering, like Collier. Lily described that in some cases, people who have been married for decades get divorces in order to be able to receive benefits and access care they would otherwise be unable to obtain without drowning in debt.
“I frequently hear the marriage penalty as kind of a single thing. And I would just caution that I think it’s actually multiple marriage penalties…there are a whole collection of very complicated rules that all….very much incentivize not getting married if you have a disability and are reliant on these types of programs, either for your health care or for the income support for you.”
A variety of bills have risen in Congress over the years to address public outcry around the Social Security Act, several of them having to do with marriage. There are at least two bills introduced this year that aim to address or eliminate marriage penalties that have remained enshrined in the law since the 70s.
One of those bills, abbreviated MAPSA, or Marriage Access for People with Special Abilities, would remove some of the SSI deeming rules that count spousal income and assets. The bill was introduced in March with bipartisan support, introduced and cosponsored by a healthy mix of Democrat and Republicans.
“Marriage is a basic civil right,” said Kandi Pickard, Senior Vice President of the National Down Syndrome Society, in a press release praising the bill and encouraging others to support it. “Individuals with disabilities deserve the freedom to secure the legal protections of marriage to build loving families and pursue the opportunities that come with the institution of marriage.”
Since March, the bill has remained stagnant in the House Committee on Ways and Means. Attempts to reach the 13 representatives who endorsed the legislation to ask about the progress of the bill were largely unsuccessful.
12 representatives, including the original sponsor, Rep. John Katko of New York, and the first cosponsor, Rep. Bill Keating of Massachusetts, did not respond to repeated emails and phone calls asking for comment. One communications director for a cosponsor said they were not “heavily involved” in the legislation, and recommended contacting Rep. Katko and Rep. Keating instead.
A representative of the National Down Syndrome Society did initially respond to email inquiries, saying they could talk about their role in the legislation. They did not respond after being sent questions about the bill.
A second bill, the Supplemental Security Income Restoration Act, was introduced by Arizona Rep. Raul Grijalva in 2017 and then reintroduced in September 2019 with the same text and provisions. The bill is more comprehensive than MAPSA, increasing resource limits and repealing provisions that significantly reduce benefits if individuals receive outside help with food or shelter, even from family.
“The Supplemental Security Income program has succeeded in serving as a last resort to keep millions of elderly and individuals with disabilities out of the harsh realities of poverty,” said Rep. Grijalva in a 2019 press release, “but far too many are being rejected from receiving the assistance they need simply because the program hasn’t kept pace with inflation.”
The bill has 35 cosponsors, largely progressive Democrats, and was often mentioned by disability lawyers who spoke about issues of marriage access with varying degrees of optimism. It has also been stuck in committee since it was introduced in September, and neither bill has received notable media coverage.
“It’s not going to happen,” said Rains, saying the bill was almost “guaranteed” not to pass. “Congress can’t even pass stuff they agree on.”
When asked how they would amend the law to address barriers to marriage, several disability lawyers had similar proposals: eliminating or raising asset thresholds, especially on spousal resources, for SSI. But even beginning to address marriage penalties would require getting legislation through a Republican-controlled Senate that has regularly focused on cuts to Social Security, and appealing to a Social Security Administration focused on strict reviews and reducing benefits to a large number of people, such as the proposed rule change currently open for comment.
Several groups focused on disability advocacy — including The Arc — have posted comments asking for extended time to comment beyond the initial 60 days due to the complexities of the law. Other comments on the law have been almost universally negative, with people numbering in the hundreds saying the change will only cause further difficulties to people who cannot return to work or live without care and assistance.
Activists like Cortland have been particularly active surrounding both issues of care access and marriage access. Among other things, he has advised presidential candidate Julián Castro in his plan to enact policies that would reform SSI and potentially allow Cortland to marry his partner of more than a decade.
Castro is not the only candidate with plans to expand the rights of Americans with disabilities, but few plans specifically address the Social Security Act. Castro’s plan is the only one that explicitly mentions marriage.
“Embedded in the very foundation of our laws is the belief that disabled Americans are a burden;” said Cortland. “That’s why we condition receipt of programs like Medicaid & SSI on crushing poverty & why we keep millions of disabled Americans from marrying.”