In 2004, Heather Hancock and Craig Blackburn went on a blind date while attending a Down syndrome advocacy conference. “I knew right away that Craig was the one I wanted to marry,” Ms. Hancock told me.
But Blackburn lived in Metairie, Louisiana, and Hancock lived in Oklahoma City. They visited each other when they could and talked on the phone constantly. The relationship grew over the next three years and eventually Mr Blackburn proposed. His parents supported their relationship, but knew that legal marriage would be complicated.
Ms. Hancock, 40, and Mr. Blackburn, 44, receive Supplemental Security Income, a federal program for people with little or no income and assets who have a disability or are over 65. SSI is also a gateway to Medicaid. and its waiver programs, which provide health care, assistance with independent living, and transportation. When policymakers established SSI in 1972, they sought to ensure that people with disabilities would not fall into poverty.
To receive the benefit in 2024, a person with a disability generally must earn less than $1,971 per month and have no more than $2,000 in assets. Income limits are an estimate of what someone in a particular financial situation needs to make ends meet. But the asset limitation for SSI recipients has not been adjusted since 1989, and marriage between two SSI recipients results in a devastating decrease in financial support. In 2024, an individual can receive up to $943 in federal SSI per month, but a married couple can receive only $1,415 and must have less than $3,000 in assets.
Marriage penalties derive from the assumption that when two people live together, their expenses are shared. And it’s true that some expenses, such as rent and household utilities, can be reduced under these circumstances. But the amount that people with disabilities receive from SSI, even single people, is now too low to cover the basic needs of modern life.
In March, 7.4 million people collected SSI benefits; 84 percent of them were eligible because of a disability. Instead of keeping people with disabilities above the poverty line, SSI restrictions prevent them from leading independent lives and getting married. SSI asset and income limits need to be increased and marriage penalties removed.
This policy question is personal to me. My daughter has Down syndrome and she may need SSI and Medicaid when she is older. Because the income requirements for SSI have not been significantly reformed since the 1980s, it has been difficult to plan for her financial future. My husband and I save as much money as we can to make sure she receives the best care possible when we are away. However, what I want most is for my daughter to have the same freedom to marry that every other American adult enjoys, but that people with disabilities, faced with this outdated system, do not have.
Ms. Hancock and Mr. Blackburn are barely getting by on their individual SSI checks. Ms. Hancock has an administrative job with the Oklahoma Department of Education. To keep her benefits, she limits herself to working about 19 hours a week. Currently, Mr. Blackburn works part-time on the New Orleans Saints equipment team. Getting married would mean sacrificing almost a quarter of his income. It is an impossible choice.
The decision Ms. Hancock and Mr. Blackburn faced illustrates a profound contradiction in the lives of people with disabilities. Employment and community participation are encouraged, but only to a certain extent. You can save, but only to a certain extent. You can work, but only a limited number of hours a week before you earn too much. You can get married, but only if you are willing to give up a significant part of your income. These rules send the message that people with disabilities have to choose between help to live independently and their freedom as adult Americans to marry, make decisions about where they live, and earn a living wage. The current system will not allow them to have both.
Ms. Hancock and Mr. Blackburn receive help from their parents to manage their benefits and determine work schedules, savings and monthly income that keep them below the SSI limits. It’s too much for one person to handle. Pat Ehrle, Mr. Blackburn’s mother, described it to me as a house of cards: One aspect of the balance shifts slightly and the entire support system collapses.
“People with special needs are one of the groups most affected by the government,” Erhle told me. But the truth is that she and other parents and caregivers are also greatly affected. Research shows that 80 percent of People with intellectual and developmental disabilities live with family members, many of them with elderly parents who will soon need to care for themselves. It is part of a Biggest crisis in care in the United States, where families have few options to improve the quality of life of their loved ones now and ensure that they will be cared for in the future.
There are ways for people with disabilities to avoid asset limitations. In 2014, Congress passed the Achieving a Better Living Experience (ABLE) Act, which allows people with disabilities to save up to $18,000 per year in designated accounts. Special needs trusts also allow parents to save for the future without affecting their children’s eligibility for benefits. But these programs do not fully address the underlying inequalities of the benefits system. Various bills have been introduced to Congress this year to eliminate marriage penalties in the SSI program. If passed, they would begin to address how this country requires people with disabilities to choose between care and the freedom to exercise their basic rights as citizens. But until that happens, millions of families will be left in limbo.
In 2016, Ms. Hancock and Mr. Blackburn went on a cruise with their families to St. Thomas, where they celebrated their engagement in a ceremony with a pastor. While they consider themselves husband and wife, they are not legally married. “We racked our brains to try to think of a way to make it work,” Ms. Ehrle explained.
For now, Hancock and Blackburn see each other four or five times a year, including birthdays and anniversaries. But I wonder how they will ever be able to save for their future. Will the same thing happen to my daughter when she is older? Marriage and financial security shouldn’t be so difficult to achieve.
Pepper Stetler is the author of the forthcoming book, “A Measure of Intelligence: A Mother’s Estimate with the IQ Test.” and professor at Miami University in Oxford, Ohio.
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