The potential effects of marriage for people with disabilities

Story and graphic by ANGIE BRADSHAW

Costs of cerebral palsy

For most people, getting married is the happiest day of their life. But for Utahns with disabilities, it means something much more complex.

It means they could lose all their state-funded benefits or they could be substantially decreased. Most people in online articles refer to this as the “marriage penalty.” This leaves individuals to choose between marriage and continuing to receive benefits. Furthermore, many people in online articles also believe this is an “anti-family” law and that something should be done about it.

The Utah state government assists single people with disabilities to help cover costs and provide additional accommodations where needed. This could be through Medicaid, Medicare, Social Security Disability Insurance or Social Security Income.

“The theory is that a couple can live on less income together than they would as individuals,” wrote B.J. Stasio, an advocate on gaining awareness for this topic. Furthermore, Stasio wrote, “The marriage penalty is misdirected and wrong because it prevents may people with disabilities from getting married or even staying married. People with disabilities deserve to be able to get married to the one they love.”

But what happens when that’s not the case or both individuals have disabilities?

Carly Fahey, a senior at the University of Utah, has cerebral palsy, a developmental disability.

She was born healthy, but her lungs were slightly underdeveloped so she stayed in the Neonatal Intensive Care Unit in Florida for the first few weeks of her life. Fahey said it was there that the nurse administered a little too much oxygen, resulting in a neurological block to a portion of her brain. This caused a lapse in communication between her brain and her motor movements, specifically her legs and feet.

She has to use a walker to assist her in getting around. She said it also affects many parts of her body. For instance, she can’t control her body temperature and her eye coordination can become constrained and shifty. This can cause anxiety and severe migraines.

On a lighter note, Fahey said in an email interview, “I see the cerebral palsy as one of the brighter and more fun things about myself. There’s never a dull moment and I keep a really humorous outlook on things. I do everything that any college student would be planning on doing, except because of my disability … I always have a plan!”

Fahey says that many people with disabilities wait a very long time before getting married or decide not to do it all because of the negative impact it could have on their lives.

She has a friend with a similar disability who told Fahey how much she feels like she will have to give up — just for her right to get married. It can be quite the dilemma because the personal insurance companies are reluctant to insure individuals when they know that the state provides those insurance benefits already, Fahey said.

According to the Centers for Disease Control and Prevention, the average lifetime costs for someone with cerebral palsy are estimated at $921,000. To break this down, it’s approximately $742,326 for indirect costs, $93,942 for direct medical costs and $84,732 for direct non-medical costs. This does not include emergency room visits and out-of-pocket expenditures. The dilemma can be overwhelming in deciding what’s the best option for all interested parties.

Of all the difficult things Fahey has encountered, the marriage issues will be one of the biggest challenges for her to navigate, she said.

“I’m confident that marriage will be wonderful,” Fahey said, “but figuring out the legal details will be an obstacle for sure. Something needs to be done.”