Meet our BIPOC Outreach ABLE NRC Ambassadors

Simon Cantos

Individual with Congenital Muscular Dystrophy (CMD)
Philadelphia, PA
ABLE Program: PA ABLE (Pennsylvania)

Simon Cantos is saving for future qualified disability expenses, like paying for a new power wheelchair and adapting a future home.

Simon Cantos working
Simon Cantos driving

Simon Cantos is a 39-year-old mechanical engineer who lives in Philadelphia, Pennsylvania. A graduate of Villanova University, he has been a Senior Sales Engineer for Carrier Air Conditioner Company since 2013 and a PA ABLE account owner since early 2021. Simon is ABLE-eligible as a result of having a rare form of Congenital Muscular Dystrophy (CMD).

Born in Sydney, Australia, Simon’s parents – a chemical engineer and nurse who were originally from the Philippines – moved the family to the United States in 1990 when he was seven-years-old, and became naturalized as U.S. citizens 11 years later in 2001. Coming from Australia where universal healthcare provided for Simon’s medical and support needs, Simon’s family was unsure about his eligibility for public benefits until a high school guidance counselor, who was helping Simon get ready to apply to colleges, told them about SSA benefits. That was when they learned that Simon’s CMD diagnosis may qualify him for public benefits such as Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI) and Medicaid. He has transitioned on and off SSA disability benefits as his income from work has varied over time. That was between stints working as a contractor for companies like Mars Electronics and Motorola before he came on board full-time with Carrier. The only public benefit he receives now is from Pennsylvania’s Medicaid Buy-In Program.

A self-proclaimed “car guy,” Simon has already used his ABLE account, opened earlier this year, to pay $1,800 for an unexpected expense for his adaptive vehicle. When he gets a new power wheelchair, Simon will use his ABLE account to help pay for part of that as well. Vocational rehabilitation will pay for the other part after looking at his work income. He is responsible beyond that for a percentage of his chair based on his salary. Simon’s portion will come to $3,200 or 15 percent of a total of $20,000. The other $17,800 for his chair will be covered by Simon’s primary insurance through his employer, along with the Medicaid Buy-In program he’s on in Pennsylvania. He’s glad he has his ABLE account to help cover that needed expense.

“I opened an ABLE account in order to save money for potential future qualified disability expenses. I hope to use my ABLE account to adapt a house in the future, which is a five/10-year goal. The housing market is a little crazy now and it’s not the best time. My dream residence would be buying an old garage or shop where I can convert an office/retail area into a residence and keep most of the garage area intact to work on my vehicle so I don’t have to go to a shop. I could also bring a mechanic over to help me work on my vehicle.”

At home, Simon uses a personal care assistant and nursing care for his needs. Once he’s in his wheelchair and dressed, Simon is ready to start his day. At work, the restroom, his cubicle, entrance and exits and other spaces are all accessible. Plus, during the pandemic, Simon has been working from home along with the rest of his office, only going into the office on Mondays. “When I first started, my boss at the time told me, ‘This is the first time that I’m aware of, that we’ve had a wheelchair using employee that we wanted to hire. We need to have a very open dialogue on how to work out some of these disability related issues.” Simon continued, “I was used to that with other companies, working things out with them. And we worked it all out. It was really reassuring to have Carrier go above and beyond to keep me employed. Working with them has been a blessing.”

Right now, Simon has his company’s health insurance and, as was mentioned earlier, he is also enrolled in “Medical Assistance for Workers with Disabilities,” Pennsylvania’s Medicaid Buy-In Program. In terms of Simon’s nursing care, he shared that his company’s health insurance wouldn’t provide for that. This is why he needs the Medicaid Buy-In program. This is the kind of challenge that Simon has gotten used to taking in stride and working his way around, and it is part of why he appreciates how easy and useful he has his found his newly opened ABLE account to be.

Simon says it best when he shares that, “ABLE accounts are something that even 10 years ago, I didn’t think was possible. Now disabled people have the ability to have a savings account or an emergency fund, which is incredible. For a family or an individual who is in the position of being able to work and earn an income, and move off SSI/DI, having an ABLE account is a godsend. It gives someone a chance. It gives a family a chance to raise funds to pay for a wheelchair or an adaptive vehicle, or to make their home more accessible. Having an ABLE account gives me a lot of breathing room and a way to save for the long-term, in a life-changing way. I have the ability to save up for a house, which is a big deal for anyone. For someone who has massive medical expenses like I do, to be able to do that, it’s amazing! My ABLE account makes that possible.”

When asked about his experience in 2021 serving as an ABLE BIPOC Outreach Ambassador, Simon says, “Thanks to the ABLE NRC and the other ABLE account owners and family members who serve as Ambassadors, I’ve been finding out more about how to best utilize my ABLE account. I know, through my years of mentoring others in the CMD community, the one recurring theme that I hear that comes up whenever I’m talking about an adaptive vehicle and adaptive driving is, “How can I afford it? I can’t save up $100k to do that. That’s impossible!” I tell them it IS possible and then I tell them all about my ABLE account and encourage them open one up and start saving funds in it for work, independent living and other expenses.”