As we wrap up Pride Month and get ready to celebrate the 4th of July, it is important to not only continue to do all we can to celebrate the resilience and beauty of the LGBTQIA+ community, but also make a commitment to look for ways to take action throughout the year to address the inequities that still exist in the pursuit of equality and justice for all. We are of course thinking in particular of those in the LGBTQIA+ community with disabilities. 

It took decades of hard work and organizing to pass laws to ensure that same sex people could get married and have the same rights and benefits as anyone else. This month marked a major historic milestone in the fight for marriage equality: the 11th anniversary of the landmark Supreme Court decision in Obergefell v. Hodges (June 26, 2015). The ruling made marriage equality the law of the land, guaranteeing same-sex couples the fundamental right to marry in all 50 states. But, the fact is that people with disabilities still do not have the same ability to marry without penalty, whether they are in same-sex relationships or not. 

Policies regarding marriage for people with disabilities began in the early 20th century in connection to the eugenics movement. In Connecticut, Pennsylvania, Ohio, Kansas, Minnesota, and Michigan, people with IDD were explicitly forbidden from marrying. Other states prohibited anyone with a “genetic defect” from marrying. Lawmakers have resisted repealing these laws based on the misguided perception that they are “protecting” individuals with disabilities who they believe to be unable to make their own choices. Quality Trust works through advocacy and legal action to correct this attitude toward the IDD community and affirm the capacity and humanity of people with disabilities and the inherent right of self-determination. 

Although the laws explicitly preventing people with disabilities from getting married are no longer being enforced in the same ways, there are still barriers for people with disabilities who want to get married. Many people with disabilities use different government assistance programs to get access to healthcare, support the purchase of medical equipment, and help to make ends meet when consistent employment may be prevented by different health challenges and/or jobs that pay a living way may be out of reach. Despite many individuals with disabilities actively seeking work, systemic barriers and lack of support resources continue to impact the full integration of people with IDD in the workforce 

Programs like Supplemental Security Income (SSI), Social Security Disability Insurance (SSDI), Disabled Adult Child (DAC), and Medicaid provide life-saving resources for people with disabilities. Losing access to these services, or a reduction in support, can mean the difference between life and death. However, current laws around eligibility for these services require people with disabilities to live within the catch-22 of affording the exorbitant cost of living while remaining under the miniscule income threshold to qualify for government support.

If someone with a disability uses government benefits or support programs to help manage their health and afford their basic needs wants to get married, they face the threat of a dramatic cut to the assistance they receive. Often referred to as the “marriage penalty”, federal rules force many people with disabilities to choose between love and the essential support they need to survive.

• If two individuals receiving Supplemental Security Income (SSI) marry, their combined monthly benefit is slashed by about 25% compared to what they would receive as two single individuals. 

• Disabled Adult Child (DAC) beneficiaries can lose their monthly stipends and Medicare if they marry someone who is not also a DAC recipient. 

• Marriage may also disqualify a person with disabilities from using Medicaid, which is responsible for providing the majority of Long-Term Services and Supports (LTSS). 

Even if individuals with disabilities choose not to get legally married, the “holding out” rule tied to SSI applies the marriage penalty to any couple who “present themselves” as a married couple. Evidence used to determine “holding out” includes a couple who live together, share assets, or refer to themselves as “married” publicly, regardless of legal marriage status.

The Marriage Equality for Disabled Adults Act (H.R. 1389) would protect people with disabilities from losing vital benefits like Social Security and Medicaid when they marry. Introduced by Representatives Jimmy Panetta (CA-19) and Zoe Lofgren (CA-18), this bill would allow DAC recipients to marry without losing benefits, eliminate penalties for SSI recipients who marry DAC recipients, and end the “holding out” rule. There are other policies that have been introduced at the state and federal levels to address these issues. Changing these rules is an important step towards continuing to reach the promise of marriage equality and advancing disability rights. 

Marriage equality is under attack again in many states and cases trying to limit every person’s ability to define who they are for themselves are being moved through the court systems. As we speak out and organize again for these important struggles, we have the chance to ensure that we do not leave people with disabilities behind. 

At Quality Trust, we believe that individuals with intellectual and developmental disabilities deserve the right to self-determination in all aspects of life, including the ability to be our authentic selves and to create the relationships, families and futures of our choosing. This Pride Month and every month, we stand with the LGBTQIA+ community’s long history of solidarity across marginalized identities and demand true equality for all.