caretaker

Growing up, Jimmy Valdes' parents raised him to focus on all the things he could do, not the things he couldn’t.

Jimmy was diagnosed with spinal muscular atrophy (SMA) in 1971 when he was only 4 years old. SMA is a degenerative spinal disease that causes weakness of the voluntary muscles — often those in the shoulders, thighs, hips, and back. People who have it usually need assistance to complete physical tasks.

 Check out Jimmy's story here, or read more below:

As Cuban immigrants, Jimmy's parents were driven and determined to give their family the most normal life possible. They took him on family vacations. He played catch with his dad. He went to school and went on dates and read comic books.

His parents made it clear to him that he would always need help but that nothing was impossible. And he believed them. Jimmy told Upworthy, "If not for the decisions they made back then, my life wouldn't have turned out the way it did. And it's still a work in progress, it's every day, every week, every month."

Jimmy can't do everything, though, and needs caretakers to assist him through his daily routine.

He needs help completing all physical activities, from hygiene to meal prep to transportation. This is a reality that he's dealt with for most of his life, and he hasn't let it limit him.

There are systems and programs in place to help people like Jimmy who live with disabilities. Unfortunately, those supports sometimes fall short. Jimmy’s reality is proof of that.

All images via Muscular Dystrophy Association/YouTube.

You see, in spite of Jimmy’s severe disability, he does not qualify for disability benefits.

He's the breadwinner in his family — he has worked for CBS for over 20 years — and because he earns an income that exceeds the amount allowed, Jimmy does not qualify for disability benefits through the Social Security Administration that would help him pay for the care and services necessary to live his everyday life.

Almost all of his care he pays for out-of-pocket.

And the costs are astronomical. He said he spends hundreds per week on caretakers. He even quipped that he's been audited by the IRS a number of times because they couldn't believe that a single man had such exorbitant expenses.

As he put it, "it costs more for me to live life."

The Social Security Administration makes it clear that it's possible to work and receive benefits, so long as your earnings aren't "substantial." What does that mean? For 2016, the SSA site says that per month, "we consider earnings over $1,130 ($1,820 if you're blind) to be substantial."

So, you can be making a barely livable wage, especially in a city as notoriously expensive as New York City and not qualify. If you make more than the figures mentioned above, your care isn't covered.

This is Jimmy's dilemma, and he’s not the only one.

The Muscular Dystrophy Association shared a post on Facebook asking for comments and insight regarding efforts to work while dealing with a muscle-debilitating disease. The responses are telling.

One person mentions that, like Jimmy, he doesn’t meet the stringent income requirements to receive benefits, but that "as long as I can work that is a far more fulfilling life then having to watch every cent to be sure I'm poor enough." Another person mentions that she is "afraid to get any kind of raise or promotion due to income caps."

These are men and women who want nothing more than to live life on their terms but who are, in effect, limited by a policy that is meant to serve them.

The very system that was built to support them has let them down.

As hard as it may be to pay for his care and continue supporting his family, Jimmy isn't letting it prevent him from living the life he dreamed of.

He continues to work because he genuinely likes what he does. He's built a career and has a network of people who support him. He met and married the love of his life and is devoted to her and her family, all of whom remain a source of endless inspiration for him. He goes to concerts and games and makes every effort to enjoy the life he's worked so hard to build.

In addition to working hard toward his own self-sufficiency, Jimmy is focused on helping others in a similar situation have the opportunity to live life on their terms.

He wants to use his voice to bring awareness to the issues that people who have disabilities face and to help find solutions. He wants everyone to have the opportunity to live life their way, much as he has. And he wants the systems that are built to support people like himself to not be the very thing that limits them.

He's not yet sure where to start, but he's determined.

People with disabilities can and do live meaningful and contributing lives, and we can work together to help ensure that the systems intended to lift up individuals with disabilities do not hold them back.

MDA is proud to be part of the collective effort to break down barriers to meaningful employment for those living with disabilities, including looking at ways to help individuals work while keeping benefits like personal care in place. Get involved today by joining MDA’s advocacy efforts, contributing to help individuals like Jimmy live unlimited, or sharing your story about how you balance employment and personal care needs by emailing advocacy@mdausa.org.