Recently, I watched Patrice: The Movie, available on Hulu. Happy/sad and honest, “Patrice” makes it clear why the term “special needs” is moving out of, or is being removed from, the lexicon of disability and disability support. Patrice, the narrator and lead, is a 50-ish woman with an intellectual disability who wants to get married to her life- and figure-skating partner, Gary, who is a 50-ish man with a developmental disability. In one of the initial scenes of the film, Patrice and Gary are advised by an attorney, specializing in disability issues, that their public sector benefits will be jeopardized if they marry. Patrice and Gary agonize about this as they rely on personal support workers to shuttle between each of their supported living situations. Gary says mournfully that it feels like a long-distance relationship even though they are only across town. Sharing one’s life with a partner is a not a “special” need but a fundamental human need, one that has been recognized in all cultures and societies throughout history.
While two people can be in a relationship without taking the step of legal marriage, there are distinct benefits, conferred by legal marriage, including recognition as next-of-kin in healthcare situations, access to health insurance under a spouse’s group policy, access to FMLA to care for one’s spouse, inheritance rights even in intestate situations, and preferential treatment for retirement assets, just to name a few. Moreover, people with disabilities, just like anyone else, may have religious or moral reasons for wanting to make their relationship a recognized marriage. Couples from different racial backgrounds and, more recently, same-sex couples fought civil rights battles to have equal access to this right. Yet people with disabilities, who rely on certain government benefits, must choose between having a life partner and having the benefits they need.
People with disabilities may be eligible for Supplemental Security Income or SSI. As the name suggests, SSI was designed to provide a modicum of “security” in the form of minimum income to a person who is unable, by reason of disability, to perform “Substantial Gainful Activity” or “SGA”. “Security” is a bit of an overstatement, given that the maximum SSI payable for 2025 is $967 per month for a single person, and this covers only 35% of the estimated basic cost of living in the Chicagoland area from which I hail. However, if two people who receive SSI marry, the maximum they can receive as a couple is $1,450 or 75% of what they would receive if they stayed unmarried.
SSI payable is computed by taking the maximum possible SSI benefit for the current year and subtracting countable unearned income and countable earned income. Countable unearned income is the total monthly unearned income less $20. Countable earned income is one-half of total earned income after the first $65 (or after the first $85 if there is no unearned income). Suppose Sam and Leslie both have disabilities. They are in a relationship, but they are not married. They both receive SSI. At first, they both receive the maximum payment of $967 per month. Then, they start to work. Both have rising earned income. After a few months, both are earning $1,100 per month. Each has their SSI reduced, according to these formulas: ($1,100 - $85) ÷ 2 = $507.50 of countable earned income and the maximum SSI of $967 - $507.50 = $459.50, which the SSA rounds down to $459 of SSI payable to each one of the non-married couple. Thus, they have a total of $918 for the two of them. However, if they are married, the calculations are as follows: ($2,200 - $85) ÷ 2 = $1,057.50 of countable earned income and the maximum SSI for a married couple of $1,450 - $1,057.50 = $392.50, which the SSA rounds down to $392 for the couple. The marriage penalty is $918 - $392 = $526.
The situation may be even more inequitable when one spouse has earned income that is higher than the other. This is because Social Security considers all earned and unearned income, attributable to the couple as a unit and subtracts the total countable amount from what is due to the couple in total. Eventually, due to working overtime, Sam is earning $2,500 per month. Leslie has a number of health problems and so is only able to earn $1,200 per month. At this point, Sam’s SSI payable is $0 because ($2,500 - $85) ÷ 2 > $967. Only $2,019 of Sam’s $2,500 in earned income is applied as SSI offset, because once SSI payable goes to $0, it cannot become negative. For Leslie, ($1,200 - $85) ÷ 2 = $557.50. Leslie is paid SSI according to this calculation: $967 - $557.50 = $409.50, which the SSA rounds down to $409. Suppose, though, that Sam and Leslie are a legally married couple. Now, they have a combined earned income of $2,500 + $1,200 = $3,700, which is used to offset the maximum SSI payable to a couple of $1,450 according to the following formulas: ($3,700 - $85) ÷ 2 = $1,807.50 > $1,450 so no SSI is payable. In other words, the entire $409 that would have been paid to Leslie has been forfeited.
In addition, eligibility for SSI requires that the recipient have very few countable resources. Countable resources include cash and cash equivalents with a few exceptions. The resource limitation is $2,000 for a single adult. So two people who are in a relationship but unmarried are allowed to have a total of $4,000 between them, but an married couple is only permitted $3,000 in total.
For people without disabilities, the loss of several hundred dollars per month might not be so significant as to prevent them from marrying. However, statistically, workers with disabilities have lower educational attainment levels, higher unemployment, higher poverty rates, and higher medical and personal care costs than workers without disabilities.* I have deliberately used an example of two working individuals because I believe firmly that most, if not all, people with disabilities, who have the capacity to work, want to do so, although they face many barriers. They should have both the right to work and the right to marry without paying a financial penalty.
*Goodman, N., Morris, M., & Boston, K. (n.d.). Financial Inequality: Disability, Race and Poverty in America. https://www.nationaldisabilityinstitute.org/wp-content/uploads/2019/02/disability-race-poverty-in-america.pdf
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