new york times logo

Within weeks of the Tarpy’s date, both knew they had found their forever partner. But three months after Mr. Contreras proposed in his Salinas, Calif., home in December 2016 and Ms. Long said an ecstatic “yes,” Ms. Long sat him down for a talk. “I told him, ‘Mark, we’re not going to be able to pursue a life together,’” she said.

She still wanted to marry him, but not if it meant giving up the health care benefits that she relies on to live.

Ms. Long is caught in a governmental quagmire. She was diagnosed at 15 with ankylosing spondylitis, a condition that causes bone fractures and sometimes requires her to use a wheelchair. As a teenager, she said, she watched her family experience financial difficulties attempting to pay for her health care when she first got sick, even though she had private insurance at the time.

Because she qualifies for Social Security benefits through a program for adults whose medical disability started before age 22, she is considered a “disabled adult child.” The designation, known as D.A.C., applies to 1.1 million Americans, according to the Social Security Administration website.

Those who qualify generally cannot continue to receive benefits if they marry someone who is not disabled or retired. (For a brief window after same-sex marriage became federal law in 2015, marrying a person of the same gender was also a workaround to avoid losing benefits; it took a while for the Social Security Administration to change the wording of its policies from “husband and wife” to “spouse.”)

Read more in the New York Times.

Written by External Article
Everyone is talking about caregiving, but it can still be difficult to find meaningful information and real stories that go deep. We read (and listen to and watch and look at) the best content about caregiving and bring you a curated selection. Have a great story about caregiving? Use our contact form to submit it to us so we can share it with the community!

Related Articles

A Field Guide to the Abeyance of Loss

A Field Guide to the Abeyance of Loss

Claudia cannot choose the path her life is taking. Neuromyelitis optica directs her, making life smaller, confined to her hospital bed until someone...

Popular categories

Finances
Burnout
After Caregiving
Housing
Relationships
Finding Meaning
Planning
Dying
Finding Support
Work
Grief

Don't see what you're looking for? Search the library

Share your thoughts

0 Comments

Share your thoughts and experiences

This site uses Akismet to reduce spam. Learn how your comment data is processed.

Join our communities

Whenever you want to talk, there’s always someone up in one of our Facebook communities.

These private Facebook groups are a space for support and encouragement — or getting it off your chest.

Join our newsletter

Thoughts on care work from Cori, our director, that hit your inbox each Monday morning (more-or-less).

There are no grand solutions, but there are countless little ways to make our lives better.

Share your insights

Caregivers have wisdom and experience to share. Researchers, product developers, and members of the media are eager to understand the nature of care work and make a difference.

We have a group specifically to connect you so we can bring about change.