A civil rights issue
When one or both people in a couple have a disability, there is a marriage penalty if they wed. Benefits like Supplemental Security Income (SSI), Survivor’s Benefits, or DAC (Disabled Adult Child) that are through Social Security, can be affected. They could even lose healthcare coverage through Medicare and Medicaid. Living with a disability can be expensive and not everything is covered. Many people with disabilities need home or vehicle modifications, which may not be covered. Besides premiums, copays, and deductibles, people with disabilities need access to prescriptions, personal care assistance, and some need DME (durable medical equipment) like: wheelchairs, shower benches or chairs, walkers, braces, or commodes. Some of these may not be covered. 26% of people with disabilities live in poverty.1 It is even higher for people with disabilities of color: 40% of African Americans with disability live in poverty.
Who is penalized?
People with disabilities, particularly those who marry another person with a disability, experience the greatest penalties. For example, If they live together while married, they lose 25% of their benefits.3 If they live together not married, not only will they benefits, it might be considered giving the appearance of being spouses, which is considered withholding, and benefits could be cut, as well.
How this is being addressed
Raising awareness of this issue is crucial. Disability self-advocates gathered in Washington DC in September 2023 with DREDF (Disability Rights Education and Defense Fund). They set up a stage in the National Mall in front of the Capital and recited commitment vows. DREDF also created a marriage equality toolkit (see Resources). Recently, an award-winning documentary addressed marriage inequity for people with disabilities. The couple, Patrice Jetter and Garry Wickham of New Jersey, held a commitment ceremony as they are unable to marry or live as a couple together. (To read a May 2024 article by Patrice published in EP Magazine, visit https://reader.mediawiremobile.com/epmagazine/issues/208928/viewer?page=34) There are several proposed laws to address these concerns, most notably the Marriage Equality for Disabled Adults Act.
Self-advocates and their families can follow the steps outlined in the toolkit and contact their legislators. People with disabilities should not have to choose between paying for their basic needs, or losing their benefits, and potentially falling into poverty if they marry.
References
1. https://www.statista.com/statistics/979003/disability-poverty-rate-us
2. https://www.nationaldisabilityinstitute.org/wp-content/uploads/2019/02/disability-race-poverty-in-america.pdf
3. https://www.ssa.gov/policy/docs/issuepapers/ip2003-01.html
I Do : Combatting Marriage Inequity
National Public Radio
Report: Couples say they can’t get married because of this government program’s outdated rules
www.npr.org/2024/06/18/g-s1-4991/social-security-ssi-marriage-penalty
Podcast: Millions of disabled Americans could lose federal benefits if they get married
www.npr.org/2022/02/13/1080464176/disabled-americans-cant-marry-able-bodied-partners-without-losing-federal-benefi
Patrice: the Movie
A documentary about the next frontier of marriage equality – disability.
www.youtube.com/watch?v=zoPi5_uTpFo
Disability Rights Education and Defense Fund Marriage Equity Toolkit
https://dredf.org/marriage-equality-toolkit
Congress.gov
Marriage Equality for Disabled Adults Act
www.congress.gov/bill/118th-congress/house-bill/6640
Center for Disability Rights
Blog: Marriage Equality
https://cdrnys.org/blog/disability-dialogue/the-disability-dialogue-marriage-equality
How I Obtained Bernadette
EP Magazine, May 2024
https://reader.mediawiremobile.com/epmagazine/issues/ 208928/viewer?page=34
ABOUT THE AUTHOR:
Lauren Agoratus, M.A. is the NJ Coordinator for Family Voices, NJ Regional Coordinator for the Family-to-Family Health Information Center, and Product Development Coordinator for RAISE (Resources for Advocacy, Independence, Self-Determination, and Employment). She also serves as NJ representative for the Caregiver Community Action Network as a volunteer. Nationally, Lauren has served on the Center for Dignity in Healthcare for People with Disabilities transplant committee (antidiscrimination), Center for Health Care Strategies Medicaid Workgroup on Family Engagement, Family Advisor for Children & Youth with Special Health Care Needs National Research Network, National Quality Forum-Pediatric Measures Steering Committee, and Population Health for Children with Medical Complexity Project-UCLA. She has written blogs and articles nationally, including publications in 2 academic journals (https://pubmed.ncbi.nlm.nih.gov/?term=agoratus+l). Lauren was named a Hero Advocate by Exceptional Parent Magazine (www.epmagazine.com Archives June 2022).
Read the article here.