My sister, Cris, divorced her husband, Dave, in 2008. But their relationship changed only on paper. They continued to live together as an intimate couple in the house they owned jointly near Midway Airport in Chicago, until my sister died in 2011.
The divorce was quite emotionally painful for Cris and Dave because they would never have considered divorcing had the state of Illinois not forced them to do so.
My sister was a wheelchair user, like I am. She hired people to assist her daily at home doing the tasks everyone does every day, like getting dressed, getting out of bed, and preparing meals. The wages of the people she hired to help her were paid by the Illinois Home Services Program, which is largely funded by Medicaid and is designed to help disabled people get the support they need to live in their communities and not in institutions. Dave was one of the people paid to assist her.
Mark Contreras and Lori Long.
One day, a state employee who was an administrator of the Home Services Program called Cris to inform her that he was aware that she was married to Dave. Thus, he said, the state would have to stop authorizing Dave to be paid for helping her because Home Services Program rules prohibited spouses from being paid to assist their partners. The only way that Dave could continue to be paid for helping her, he told Cris, would be for them to get a divorce.
So that’s what Cris and Dave did. I remember how deeply upset they were about it at the time. They felt as if they had no choice but to comply with the rule, even though they saw it as antiquated, unfair, and brutally punitive. They were right.
Such rules are borne of an assumption that supporting people with disabilities is a private, family responsibility. But the great advancements brought about by the disability rights movement, such as the Americans with Disabilities Act, assert the opposite assumption: that disability support is a community responsibility and everyone should be part of the solution.
It’s not a simple matter of love. You can love someone in your family with all of your heart but that won’t levitate them out of bed and into their wheelchair. You have to hire reliable people to do that. This takes money and, of course, some families have a whole lot more of it than others.
If we shrug off supporting disabled people as solely a family responsibility, we are saying that the only disabled people who deserve to live in our communities are those who come from families wealthy enough to pay for everything they need to make that possible.
Expecting family members to be unpaid caregivers puts many of them in a difficult bind. It’s considered their obligation to be available whenever their disabled family member needs assistance. But they’re also expected to find the time and energy to work for a living.
Well, there are only so many hours in a day, so which is it going to be? Sometimes, the only way a person can afford to give their time and energy to assist a disabled family member is to pay them for doing it. That’s the kind of progressive public policy that keeps loving families together.
But still, today, disabled people who want to be married to the ones they love risk losing the public support they can’t live without. This is the result of dumb rules grounded in the false premise that having a family eliminates a disabled person’s need for, or right to, public support.
On Christmas Day in 2016, Mark Contreras of Salinas, California, dropped to one knee, and held out an engagement ring to his girlfriend, Lori Long, and asked her to marry him. The proposal is captured on a video the couple posted on YouTube. Lori, tearfully and repeatedly, says yes.
Lori and Mark then set about the business of planning their wedding. But they reluctantly put that process on hold after just three months. Now, more than five years later, their wedding still hasn’t happened, even though Lori and Mark plan to be together for the rest of their lives. In fact, for them to get married will probably take an act of Congress.
Bill Adams and Sherri Daniel exchange vows in Ohio in 2020. After a years-long fight for their right to marry without losing any of their disability income, the couple finally wed in January. The couple found out Sherri can keep her income as a dependent drawing from her deceased father's Social Security. But the marriage penalty remains an insurmountable obstacle for many couples with disabilities.
Lori is what the Social Security Administration refers to as a Disabled Adult Child (DAC). Because she was disabled prior to age twenty-two, she receives a monthly Social Security payment of about $1,200 and also Medicare health coverage, based on the work record of her parents. But if she gets legally married to anyone except another DAC, she will no longer be eligible for her Social Security DAC support.
Mark and Lori didn’t know this until they began making their wedding plans. But a wise friend strongly urged Lori to look before leaping. So Lori asked the Social Security Administration and learned that there is indeed a taboo against non-DAC marriage.
Lori has lived for many years with an inflammatory auto- immune condition similar to arthritis that’s caused her to have many spinal fractures. At times, she has had to use a wheelchair for mobility. Nowadays, she walks using a cane. She typically has at least one extended hospitalization every year, at a cost of about $50,000.
Lori and Mark ran the numbers to get an idea of what it would cost them if she no longer had Medicare coverage and had to be added to the insurance plan Mark receives through his job with a nonprofit organization. They concluded that all of the additional premiums, co-pays, deductibles, out-of-pocket expenses, and whatnot would make the financial burden prohibitive.
“I hate what this country’s medicine-for-profit has done,” Lori tells me. “We made the heartbreaking decision that, in order for me to stay alive, we could not get married.”
Lori and Mark told their story to their U.S. Congressional Representative Jimmy Panetta, Democrat of California. As a result, Panetta in January introduced the Marriage Equality for Disabled Adults Act. This bill would, among other things, eliminate the non-DAC marriage prohibition.
“The current law can put people in a position where they are forced to choose between their health care or their happiness,” noted Panetta in a statement announcing the bill’s introduction. “That type of marriage penalty is antiquated, and I hope to change it through my legislation.”
Lori spends much of her time these days pushing for the bill’s passage. She feels that this is as important a legal battle for marriage equality as those that led to the landmark U.S. Supreme Court decisions in the cases of Loving v. Virginia, which invalidated state laws prohibiting interracial marriage, and Obergefell v. Hodges, which guaranteed people of the same gender the right to marry.
“Mark and I are both still surprised that, post-Loving and Obergefell, the quest for marriage equality within the disability community is still ongoing,” Lori says. “Our love didn’t disappear just because of this archaic policy. Love is powerful and we both believe in its power.”
She continues, “I’ve been through tremendous hardship in my life and found a piece of happiness with Mark. I wasn’t about to let a ridiculous policy be the final chapter of a beautiful love story. Mark has encouraged me every step of the way to fight for change. Together, I think we have a shot at winning this fight.”
I hope she’s right. But I have my doubts, because Congress has bungled several opportunities to do away with yet another longstanding marriage penalty that punishes disabled people who receive Social Security’s Supplemental Security Income (SSI) monthly payments. Disabled people or people aged sixty-five and older who haven’t worked at all or enough to qualify for Social Security payments to workers who become disabled are eligible for SSI. About eight million people live off of SSI.
The maximum SSI monthly payment for an individual is $841. But if two SSI recipients marry, their combined maximum is reduced to $1,261. That’s $421 less than they would get if they didn’t get married. When people are in this income bracket, that’s a whole lot of money to forgo.
So, last June, Senator Sherrod Brown, Democrat of Ohio, introduced the SSI Restoration Act of 2021. This bill would make numerous overdue changes to unfair SSI rules, including doing away with the marriage penalty.
But the problem is that legislation with the same name and purpose has already been introduced in every session of Congress since 2013. And each time, Congress has failed to act, regardless of which party was in the majority.
So, again, I hope Lori is right to believe that the Marriage Equality for Disabled Adults Act will pass. I’d sure hate to see her and Mark still waiting, ten years from now, for the law to change to allow them to marry.