The costs of living with a disability: A conversation with Jim Sinocchi

 The costs of living with a disability: A conversation with Jim Sinocchi           

by Elana Duré                                                                                                  Content and Communications, J.P. Morgan Wealth Management

Oct 06, 2021

People with disabilities encounter a wide range of expenses, from medical and transportation costs to unrealized earnings because of barriers posed by societal limitations.

• Jim Sinocchi, Head of Disability Inclusion at JPMorgan Chase, informs us about the challenges people with disabilities face in their daily lives.

• From the workplace to public transportation, communities have work left to do in building a more inclusive society for people with disabilities.

People with disabilities encounter a wide range of out-of-pocket expenses, including medical expenses and transportation costs. Estimates show that households with an adult who has a work-disability require an average of 28% more income, or an additional $17,690 per year, to obtain the same standard of living as a comparable household without a member with a disability.

The extra costs of living with a disability broadly fall into two categories: direct and indirect expenses. Direct costs include personal assistance services and health care, while indirect costs are associated with the unrealized earnings people with disabilities incur from outdated state and federal asset and income limitations, as well as the costs to family members who reduce their working hours to care for their loved ones.

In honor of National Disability Employment Awareness Month, we spoke to Jim Sinocchi, Head of Disability Inclusion at JPMorgan Chase. Sinocchi sustained a spinal cord injury early in his business career following a bodysurfing accident. He tells us about the challenges people with disabilities face in their daily lives.

What are the hidden costs of living with a disability?

That's a hard question to answer; it depends on what kind of disability you have. First of all, the medical costs are astronomical. If I wasn’t fortunate enough to be working at a major corporation at the time of my accident, I'd probably be destitute by now. If someone is not insured, you could just imagine what they have to pay out of pocket, or with a lesser income standard. That's the big picture. The smaller picture involves the day-to-day costs like buying a wheelchair, hiring a personal care assistant or modifying a vehicle to accommodate a person with disabilities who may be like me. Those are costs that really add up.

Many people with disabilities do not go to work simply because the cost of losing their government benefits is unsustainable. The underlying problem is too many agencies, including the Social Security Administration, still define disability as an inability to work. Data shows that, in 2017, 8.2 million people with disabilities were on Supplemental Security Income (SSI) and 9.8 million on Social Security Disability Insurance (SSDI). Secondly,  If working-age SSI or SSDI recipients were allowed to work and keep their benefits, 7.9 million Social Security recipients and 8.5 million SSI recipients might be employable.

So in terms of a quick back-of-the-envelope analysis, if you multiply the total of 16.4 million people by their median earned income of $23,000, at the time, working people with disabilities would represent a potential income tax base of $377 billion. That income generation would be going into the marketplace instead of keeping people at home.

Are there ways that society can help lower these cost barriers?

I don't know if the cost barriers are the problem because everything costs money, right? The idea is how do we rethink old policies in the new age. That's the difference. So at JPMorgan Chase, for example, we recently began hiring people who have intellectual and developmental disabilities (IDD). We’re bringing in these workers to do jobs that are helping to improve overall productivity for the firm. Our employees are performing tasks that their neurotypical colleagues find mundane or boring – making them prone to errors – and they’re doing them well. They’re not only adding value to our business, they’re also improving team morale.

My point is, if you think about disability differently – instead of viewing disability as being “unable to do things,” you can find ways to enable people with disabilities to succeed based on their capabilities. You can make it viable for people with disabilities to work at all levels of a company because they have the skills to do the job. We have talented people at all levels of our company, up to managing director, with either hidden or visible disabilities. It’s only when you look at disability with “different eyes” that you can change the paradigm and make a sustained difference regarding equity and inclusion.

When people start hitting income limits and risk losing benefits with state or local governments – like our workers with IDD may experience, for example – we must drive change and a new discussion about work and disability. We must ask state and local governments to reconsider their policies because it disenfranchises people with disabilities who want to work. Let's change the paradigm: Let people work and earn as much as they can for themselves while contributing to society. If we don’t look to make these changes, we risk having a community of people who never work, who never contribute, and basically exist marginally at or below the poverty line.

For those people who are able to work and get a job, what are some challenges or considerations that they face in the workplace?

The first challenge is how do you get to work? If you don't have accessible transportation, you have a problem. This country really has a great transportation system, but it’s still managed with “old eyes.” We need to look with new eyes and ask, “How can we better educate and integrate people with disabilities in our society? How do we get skilled people with disabilities to work? How do we do this differently and deliberately?”

Also, parents of working-age children with various disabilities are worried about their kids exceeding their eligibility requirements for state and federal disability benefits as I mentioned — specifically in terms of asset and income limitations. It means their son or daughter may have to scale back their hours if they think they’ll exceed that income ceiling. This is important because it could also affect their ability to qualify for housing so they can live independently. That’s a big concern for parents who worry that when they pass away, their kids won’t have a place to go. Who do they live with? How do they care for themselves? If we don't do something differently now as we look at these policies, and changing the way society views people with disabilities and how they can work, we are going to fail. We must find solutions that raise everybody up as much as we can.

What are some other considerations that parents of children with disabilities might have throughout the child's life?

You always have to think about accessibility. Not all buildings have elevators, for example – and depending on the disability, that can be a huge barrier. And that poses a problem: How do you, as a young person with a disability, get through your journey of life with a sense of independence when society is not entirely accessible?

In addition, if both parents must work, who takes care of a child with a disability who requires around-the-clock care? Are there support services available to help parents? Frankly, it varies, and this is a big problem; it's not an easy one to solve. But when you talk about a locality or community, you've got to assess your community and make sure that people with disabilities can thrive.

In closing, a mother wrote to me saying that her son saw a picture of me in my wheelchair, in our company newspaper, with my service dog, Veronique. The child turned to his mother and said, “Mom, I see that man in the wheelchair, does that mean I can go to work someday?”

That still sticks with me.

Children who have a disability are wondering what their future looks like living with a disability. Programs like ours at JPMorgan Chase will give them hope – and that’s why I’m going to keep doing this work as long as I can.

FOOTNOTE:

1. National Disability Institute, “The Extra Costs of Living with a Disability in the U.S. — Resetting the Policy Table.” (October 2020)

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** This article was originally written and posted on our external website at:

https://www.chase.com/personal/investments/learning-and-insights/article/the-costs-of-living-with-a-disability-a-conversation-with-jim-sinocchi

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