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Guest Essay
By Pepper Stetler
Ms. Stetler is the author of the forthcoming book, “A Measure of Intelligence: One Mother’s Reckoning With the I.Q. Test.”
In 2004 Heather Hancock and Craig Blackburn were set up on a blind date while attending a Down syndrome advocacy conference. “I knew right away Craig was who I wanted to marry,” Ms. Hancock told me.
But Mr. Blackburn lived in Metairie, La., and Ms. Hancock 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. Their parents supported their relationship, but they knew that legal marriage would be complicated.
Ms. Hancock, 40, and Mr. Blackburn, 44, both receive Supplemental Security Income, a federal program for people with little to no income and assets who have a disability or are over the age of 65. S.S.I. is also a gateway to Medicaid and its waiver programs, which provide health care, help with living independently, and transportation. When policymakers established S.S.I. 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. The income limits are a calculation of what someone in a particular financial situation needs to make ends meet. But the asset limitation for S.S.I. recipients hasn’t been adjusted since 1989, and marriage between two S.S.I. beneficiaries results in a devastating decrease in financial support. In 2024, an individual may receive up to $943 in federal S.S.I. a month, but a married couple may 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 — like rent and household utilities — may be reduced in those circumstances. But the amount people with disabilities receive from S.S.I., even single people, is now too low to cover the basic needs of modern life.
In March, 7.4 million people collected S.S.I. benefits; 84 percent of them were eligible because of a disability. Rather than keeping people with disabilities above the poverty line, S.S.I. restrictions are preventing them from leading independent lives and marrying. S.S.I. asset and income limits need to be raised and marriage penalties should be eliminated.
This policy issue is personal for me. My daughter has Down syndrome and might need S.S.I. and Medicaid when she is older. Because the income requirements for S.S.I. haven’t been meaningfully reformed since the eighties, it has been difficult to plan for her financial future. My husband and I save as much money as we can to ensure that she will have the best care possible when we’re gone. Most of all, though, I want my daughter to have the same freedom to marry that every other adult American enjoys, but which people with disabilities, faced with this outdated system, do not.
Ms. Hancock and Mr. Blackburn are barely scraping by on their individual S.S.I. checks. Ms. Hancock has a clerical job with the Oklahoma Department of Education. To keep her benefits, she is limited to working about 19 hours per week. Right now, Mr. Blackburn works part-time on the equipment team for the New Orleans Saints. Marrying would mean sacrificing nearly a quarter of their income. It’s 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 involvement are encouraged, but only up to a point. You can save, but only so much. You can work, but only so many hours a week before you earn too much. You can marry, but only if you’re willing to give up a significant portion of your income. These rules send the message that those with disabilities have to choose between help with living independently and their freedom as adult Americans to marry, to make decisions about where they live and to earn a living wage. The current system won’t allow them to have both.
Ms. Hancock and Mr. Blackburn get help from their parents to manage their benefits and figure out work schedules, savings and monthly income that keep them under the S.S.I. limits. It is too much for one person to manage. Pat Ehrle, Mr. Blackburn’s mother, described it to me like a house of cards: One aspect of the balance changes slightly and the entire system of support collapses.
“Individuals with special needs are one of the groups hit hardest by the government,” Ms. Erhle told me. But the truth is that she and other parents and caregivers are hit pretty hard too. Research shows that 80 percent of people with intellectual and developmental disabilities live with family members, many with aging parents who will soon need care of their own. It is part of a larger crisis in caregiving in America, in which families are provided with 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 work around asset limitations. In 2014 Congress passed the Achieving a Better Life Experience (ABLE) Act, which allows people with disabilities to save up to $18,000 per year in designated accounts. Special need trusts also allow for parents to save for the future without affecting their child’s eligibility for benefits. But these programs don’t fully address the underlying inequities of the benefit system. Several bills have been introduced to Congress this year to eliminate marriage penalties in the S.S.I. program. If they pass, they would start 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 are left in limbo.
In 2016, Ms. Hancock and Mr. Blackburn went on a cruise with their families to St. Thomas, where they celebrated their commitment in a ceremony with a pastor. While they consider themselves to be 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, Ms. Hancock and Mr. Blackburn see each other four or five times a year, including birthdays and their anniversary. But how, I wonder, will they 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 this hard to achieve.
Pepper Stetler is the author of the forthcoming book, “A Measure of Intelligence: One Mother’s Reckoning With the I.Q. Test” and a professor at Miami University in Oxford, Ohio.
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