The Big Questions
Like every parent, Marci Bennett wants the best for her teenage son, Hayden. Hayden has high-functioning autism, and Marci had some important questions. What kind of life could Hayden look forward to? What would he do for work? What would his financial situation look like once his parents were gone?
by Mitch Blatt
Marci needed answers, but wasn’t sure where to start looking.
“When you have a special needs child,” she says, “there are so many factors that come into play that are very difficult to answer. Each child is different, and it feels impossible to know what your child’s full potential is. Even the professionals cannot be certain about how much assistance your child will need to be able to function in society.”
If she couldn’t find definite answers, she’d be left wondering. Nobody likes uncertainty, but it’s especially bad when the things you’re uncertain about revolve around your
Marci “had” an intense desire for answers, past tense. She found them when she proactively attended a transitional planning workshop where organizations presented what services they had available for people with disabilities and their parents.
One day, a quarterback named Connor Kavanaugh decided to go into finance. After getting a football scholarship and thinking to himself, “I might as well get a degree which is worth the money that they’re actually paying,” he decided to go into business. When it came time to specialize, he says, “I decided upon finance. Honestly, growing up, I was never good with numbers, so [...] there were times in which I wasn’t sure why I chose finance. [...] I don’t think there’s really any rhyme or reason, honestly, [...] though I knew I liked finance early on in college. I actually liked investing, I didn’t really like the finance part of it. I think I was excited about people putting money in the stock market, less about the corporate finance stuff.”
“I realized very early on that there’s a lot of people in personal finance, a lot of people who are doing financial planning for the general population. I realized that [...] I had to be different. [...] I said ‘there is nobody doing this. Doesn’t matter where you live, doesn’t matter who you are. There’s important areas of this which people need to know,’ and [...] honestly, it was probably just 5% me saying ‘there’s a huge need here,’ honestly 95% luck.”
Kavanaugh thinks that one of the big reasons why there aren’t more people working in disability finance is “the stigmas around the disability community.”
Unfortunately, recent statistics don't contradict the stigma. According to the CDC’s 2019 statistics, 26% of the US population has a disability. Of this, 6.8% have trouble doing errands alone. In the US, 1 in 3 people with a disability do not have a usual healthcare provider and have a healthcare need that is unmet due to prohibitive costs.
As of June 2019, the percentage of people with disabilities who participate in the labor force is 33.9%, compared to 77.8% of able-bodied participants.
Of the total number of non-institutionalized people with disabilities between 21 and 64 years of age living in the United States, Cornell University's DisabilityStatistics.org estimates that 26.0% lived below the poverty line in 2018, and 19.0% received SSI benefits.
“When I first got into [disability finance],” Kavanaugh says, “It was surprising. There was encouragement, but there were a lot of people who said ‘Well, just remember, families in the disability community don’t have lots of money, and they don’t make decisions very quickly.’ All these things which [...] are not true by any means. The general population, I think, has these stigmas and biases that they’ve accumulated over time that are completely untrue about the community, like ‘they’re all low-income families’ and ‘they all didn’t graduate from college.’” There aren’t more people working in the field because “they honestly do not understand. They don’t understand that somebody who went to Stanford, they have the same chance of having a child with a disability as someone who did not graduate from high school, generally speaking.”
With all this in mind, Kavanaugh founded Palladio Planning, a Portland, Oregon-based company that specializes in financial planning for people with disabilities and their families. He got the name “Palladio” from Googling terms like “roadmap” and “guidance planning.” He found a news article about Andrea Palladio, a Renaissance architect who espoused the philosophy that architecture and parts of life which were seen as unworthy should be given dignity. This philosophy lined up perfectly with Kavanaugh’s mission: “It spoke to me, and I liked the story of it.”
Palladio’s staff feel excited whenever a client comes in to ask for their help. The most common question parents have, aside from financial concerns, is ‘What do we need to put in place to ensure that our loved one’s needs are met when we’re no longer here?” Parents want their children to be set up for future success in terms of things like housing, employment, eligibility for benefits and employment. They need a roadmap to their child’s success, and Palladio’s staff get to help them draft one.
When it comes to Palladio Planning’s future, Kavanaugh says that “goal number one” is to “serve more families.” There are questions on both sides of the table. The parents are concerned about what will happen to their child once they’re gone, and the staff wonder, “How do we continue to serve more families?” According to him, this “comes down to capacity issues. There’s only so many people on our team, and there’re so many families that need our services.” So far, they’ve helped 3,500 families.
It was at that transitional planning workshop that Marci and the Bennetts became one of those 3,500 families. “The staff was very accommodating and even stayed later into the evening to work around me and my husband’s work schedules.” Marci says, adding, “They are very understanding and knowledgeable about the different situations parents of special needs kids are facing. [...] They explained things so that we could understand all the nuances and implications, allowing us to make the best decisions for our situation. They showed us where we were at, what options we had and why they suggested what they did. They did not put any pressure on us or force us to go a certain route or do something we were uncomfortable with. [...] Meeting with Palladio not only answered questions about financial issues that could arise, but it [...] has helped to eliminate a lot of the worry I had about his future.”
Kavanaugh’s advice for parents dealing with disability-related un- knowns is to “start with the [...] end in mind. Regardless of how old [...] whomever you’re planning for is, you want to begin thinking about ‘okay, so what’s the goal in five years, or ten years, or twenty years? What do we want to make sure life looks like then?’ And then work backwards from there. You’ve got to have a vision first before you can put together the roadmap.”
He would like people with disabilities to know that “knowledge is power, so the more that you know and the better educated you are, the better you can plan. That goes
for anybody in general regardless of what the situation may be, but when it comes to understanding the different accounts, benefits, tax deductions and credits that are available, the most important thing that anybody can do is to be educated and knowledgeable on some of those things.“
Back to the Bennett family, Marci says that life has been better as a result of the consulting and planning done through Palladio. “Obviously, nobody knows what’s going to happen, especially in this pandemic,” but “at least I feel like we have done everything that we can to get it set up where he will be eligible for government assistance once he’s 18, and especially if he’s able to move out on his own. Whatever my husband and I do end up leaving behind will be set up in a structure that someone will be there to look out for him and to make sure that he has finances to pay for what he needs. [...] Knowing that this is set up [...] takes a lot of stress out of the back of your mind, knowing if something happens to us, what would happen to my son.” Hayden’s future isn’t clear, since he’s in high school, but Marci hopes that he graduates with a modified diploma and takes any college classes he wants to. The goal is “to get him at a point where he can find something to do that he loves, that is gainful employment, and get him to a point where he can ideally live on his own or with minimal support. We hope that includes some college, but we’re still on the fence on that one as of right now.”
If there’s one thing Marci Bennett would like to say to families in their former position of having all those unknowns to contend with, it’s this: “I would say the biggest thing that is probably the hardest is finding the resources. There are a ton of resources for support, for financial assistance, for training, county support, there’s a lot of stuff out there, but finding it is challenging, and qualifying for it can be tricky. Getting to a point where you can understand what the requirements are [...] that right there was the biggest key, understanding what the requirements were to qualify for things and to stay qualified. But there is a ton of stuff out there if you do go search for it, it’s just not real easy sometimes to find it. Connor set us up with a lot of resources. He gave us some direction and names, and that has been extremely helpful, just because it feels like you’re kind of lost in this big bubble. The schools can offer a lot too, but you do have to fight for it, it’s not something where they’re real anxious to give it, because it does cost the school district to support kids, so you do have to be an advocate for your child. I think the biggest thing to know is that to keep pushing for it, to keep being
the squeaky wheel. There is help out there, you just have to be aggressive and really ask and push and keep looking and searching.”
The stigmas around disability negatively affect a disabled individual’s chances of having the independence that their able-bodied peers enjoy, but it doesn’t have to be this way. Finding help like Palladio doesn’t have to be like searching for a needle in a haystack. If we have more organizations like Palladio—more people helping the disability community plan for their finances and other such important aspects of living—then more people with disabilities will have access to the same independence, income and sense-of-purpose opportunities that able-bodied people do. There’s almost a moral imperative to make those stigma-supporting stats change for the better.