Jimmy has built a wonderful life, but his diagnosis presented some unexpected challenges.
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Muscular Dystrophy Association

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.

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Some 75 years ago, in bombed-out Frankfurt, Germany, a little girl named Marlene Mahta received a sign of hope in the midst of squalor, homelessness and starvation. A CARE Package containing soap, milk powder, flour, blankets and other necessities provided a lifeline through the contributions of average American families. There were even luxuries like chocolate bars.

World War II may have ended, but its devastation lingered. Between 35 and 60 million people died. Whole cities had been destroyed, the countryside was charred and burned, and at least 60 million European civilians had been made homeless. Hunger remained an issue for many families for years to come. In the face of this devastation, 22 American organizations decided to come together and do something about it: creating CARE Packages for survivors.

"What affected me… was hearing that these were gifts from average American people," remembers Mahta, who, in those desperate days, found herself picking through garbage cans to find leftover field rations and MREs to eat. Inspired by the unexpected kindness, Mahta eventually learned English and emigrated to the U.S.

"I wanted to be like those wonderful, generous people," she says.

The postwar Marshall Plan era was a time of "great moral clarity," says Michelle Nunn, CEO of CARE, the global anti-poverty organization that emerged from those simple beginnings. "The CARE Package itself – in its simplicity and directness – continues to guide CARE's operational faith in the enduring power of local leadership – of simply giving people the opportunity to support their families and then their communities."

Each CARE Package contained rations that had once been reserved for soldiers, but were now being redirected to civilians who had suffered as a result of the conflict. The packages cost $10 to send, and they were guaranteed to arrive at their destination within four months.

Thousands of Americans, including President Harry S. Truman, got involved, and on May 11, 1946, the first 15,000 packages were sent to Le Havre in France, a port badly battered during the war.

Thousands of additional CARE Packages soon followed. At first packages were sent to specific recipients, but over time donations came in for anyone in need. When war rations ran out American companies began donating food. Later, carpentry tools, blankets, clothes, books, school supplies, and medicine were included.

Before long, the CARE Packages were going to other communities in need around the world, including Asia and Latin America. Ultimately, CARE delivered packages to 100 million families around the world.

The original CARE Packages were phased out in the late 1960s, though they were revived when specific needs arose, such as when former Soviet Union republics needed relief, or after the Bosnian War. Meanwhile, CARE transformed. Now, instead of physical boxes, it invests in programs for sustainable change, such as setting up nutrition centers, Village Savings and Loan Associations, educational programs, agroforestry initiatives, and much more.

But, with a pandemic ravaging populations around the world, CARE is bringing back its original CARE packages to support the critical basic needs of our global neighbors. And for the first time, they're also delivering CARE packages here at home in the United States to communities in need.

Community leaders like Janice Dixon are on the front lines of that effort. Dixon, president and CEO of Community Outreach in Action in Jonesboro, Ga., now sends up to 80 CARE packages each week to those in need due to COVID-19. Food pantries have been available, she notes, but they've been difficult to access for those without cars, and public transportation is spotty in suburban Atlanta.

"My phone has been ringing off the hook," says Dixon. For example, one of those calls was from a senior diabetic, she remembers, who faced an impossible choice, but was able to purchase medicine because food was being provided by CARE.

Today, CARE is sending new packages with financial support and messages of hope to frontline medical workers, caregivers, essential workers, and individuals in need in more than 60 countries, including the U.S. Anyone can now go to carepackage.org to send targeted help around the world. Packages focus on helping vaccines reach people more quickly, tackling food insecurity, educational disparities, global poverty, and domestic violence, as well as providing hygiene kits to those in need.

From the very beginning, CARE received the support of presidents, with Hollywood luminaries like Rita Hayworth and Ingrid Bergman also adding their voices. At An Evening With CARE, happening this Tuesday, May 11, notable names will turn out again as the organization celebrates the 75th Anniversary of the CARE Package and the exciting, meaningful work that lies ahead. The event will be hosted by Whoopi Goldberg and attended by former Presidents Barack Obama, George W. Bush, Bill Clinton, and Jimmy Carter, as well as Angela Merkel, Iman, Jewel, Michelle Williams, Katherine McPhee-Foster, Betty Who and others. Please RSVP now for this can't-miss opportunity.

via Mike Mozart / Flickr

The Biden administration was prevented from inserting a $15 per-hour federal minimum wage in its $1.9 trillion coronavirus relief package in February due to a ruling by the Senate parliamentarian. It was the closest the federal government has come to raising the minimum wage to a level that activists have been fighting for over the past decade.

However, an unusual set of circumstances have aligned that could push the private sector into creating a de facto $15 minimum wage without any government mandate.

The restaurant business was shaken on Monday when Chipotle announced it was raising its current average wage of $13 an hour by another two dollars, bringing it to around $15. The change should be in full effect by June.

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Photo by Daniel Schludi on Unsplash
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The global eradication of smallpox in 1980 is one of international public health's greatest successes. But in 1966, seven years after the World Health Organization announced a plan to rid the world of the disease, smallpox was still widespread. The culprits? A lack of funds, personnel and vaccine supply.

Meanwhile, outbreaks across South America, Africa, and Asia continued, as the highly contagious virus continued to kill three out of every 10 people who caught it, while leaving many survivors disfigured. It took a renewed commitment of resources from wealthy nations to fulfill the promise made in 1959.

Forty-one years later, although we face a different virus, the potential for vast destruction is just as great, and the challenges of funding, personnel and supply are still with us, along with last-mile distribution. Today, while 30% of the U.S. population is fully vaccinated, with numbers rising every day, there is an overwhelming gap between wealthy countries and the rest of the world. It's becoming evident that the impact on the countries getting left behind will eventually boomerang back to affect us all.

Photo by ismail mohamed - SoviLe on Unsplash

The international nonprofit CARE recently released a policy paper that lays out the case for U.S. investment in a worldwide vaccination campaign. Founded 75 years ago, CARE works in over 100 countries and reaches more than 90 million people around the world through multiple humanitarian aid programs. Of note is the organization's worldwide reputation for its unshakeable commitment to the dignity of people; they're known for working hand-in-hand with communities and hold themselves to a high standard of accountability.

"As we enter into our second year of living with COVID-19, it has become painfully clear that the safety of any person depends on the global community's ability to protect every person," says Michelle Nunn, CARE USA's president and CEO. "While wealthy nations have begun inoculating their populations, new devastatingly lethal variants of the virus continue to emerge in countries like India, South Africa and Brazil. If vaccinations don't effectively reach lower-income countries now, the long-term impact of COVID-19 will be catastrophic."

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