The Creative Portfolio of Melissa K. Vassar-Belloso

Thoughts of an Aspie: How Money Matters Differ for the Disabled

by Melissa K. Vassar-Belloso

How Money Matters Differ for the Disabled

By Melissa K. Vassar-Belloso

Introduction

Being in debt is something you and I have in common. Disabled people go into debt like any normal person does but at the same time not like that at all. What I mean is the concept of being in debt is the same but the reasons and the sheer amount of debt might astound you. Now to preface a little, I will really only be able to give good examples for areas I’ve experienced but a lot of what I say can translate across the board for a variety of disabilities. I’m not going to go into statistics because I don’t think people should be converted into numbers. I don’t like being referred to as a statistic and I think that’s probably a sentiment shared by a lot of people whether they’re disabled or not. That being said, let’s dive into this hot mess. I am coming down from a bit of mental downtime so I apologize if I’m not especially organized in parts.

Medical Debt

While a relatively healthy person spends some time at the doctor and definitely racks up medical bills, a disabled person can easily expect two or three times the amount of medical debt depending on their situation and needs. I know personally I racked up thousands in credit debt not buying a shiny new TV or trendy clothes but by taking care of doctor bills and medical needs. A few days in a psychiatric hospital alone is between $1500 and $2000+ and that doesn’t factor in the medications or appointments you have to attend after discharge.

And let’s talk medications for a minute. Psychiatric medications alone cost a pretty penny. I can recall as high as a few hundred being the cash amount for a month supply of some medications I’ve had before. At the time mind you I did have insurance so it knocked it down to a reasonable copay and I could quietly gawk in horror at the cash prices. Would I be getting medications without a copay in place? I seriously doubt it. A lot of disabled people don’t get the medications they need for that very reason. Without insurance and even with those costs add up over time and rather significantly. Adding to that is that a good number of psychiatric drugs don’t have generics so there aren’t always generic workarounds to the pills you need. To be fair, this is true of a lot of prescription drugs but when you struggle with a disability the tougher pill to swallow is what medications mean for you and why the cost is so necessary and piled on.

As opposed to taking a pill for something typical that for all intensive purpose won’t drastically change the person you are some psychiatric medications can quite literally mean night and day in terms of how a person behaves. When you think about what these types of drugs do it’s very scary because they have the power to change a person. For instance, your coworker that’s friendly and talkative can spiral into someone you don’t know without their medication if it’s for anxiety or depression. They are a subset of pills that can literally jack around with how your mind works. This means a lot of disabled people in some degree depend on a pill to be acceptable in the eyes of society and just function in general. I’ve personally dealt with crippling depression that took a complete 180 with a pill but I’ve also gained characteristics of a mental illness I didn’t have when the pills were wrong. They are very scary pills to deal with and you basically have to submit to being a test monkey in a way finding the right one so you will go through a lot and you will have to be weaned off and on to each different pill. Finding the right medication and being able to keep getting it to a point it benefits you is a very time consuming,frustrating and costly process.

On top of that if you need things like actual equipment it is not going to be cheap and depending on the equipment may have to come out of pocket because your insurance doesn’t cover it. You might be thinking something like a cane or wheelchair and not question the price of something like that but try $200 for a blanket. That’s not a joke. A weighted blanket is a common therapeutic item for people on the spectrum and a double bed sized one will put you out at least $200. Don’t expect your insurance to cover it. Most autism therapy supplies are not covered by insurance and in fact some therapies also have to come out of pocket. Speech therapy is commonly not covered for autism patients and can cost over $100 a session. I was really floored to talk to my speech therapist from way back and learn that multiple insurance companies don’t think speech therapy is necessary but speech assistance devices are. Anomalies like this exist fairly frequently in mental health and a lot of the more arcane areas of disability treatment. The weighted blanket I do have is a throw sized one and still cost a hefty $150. It weighs about 5 pounds and I had to first pay out of pocket for it and then run it through the HSA I had through work. Under most circumstances though I’d just go without the therapy aid I needed.

But at the end of the day a lot of equipment needed for some disabilities just isn’t covered because it’s either uncommon or not seen as a medical aid. Something common you might know actually falling into a bit of a coverage hole is a brace. Depending on the type of brace and it’s availability it might not be covered by insurance. Even if you have a valid medical reason for buying it braces are what you would think would be easy to see as a medical item but often they aren’t. Strangely when I would buy braces from say a CVS or some basic store some would be covered by my HSA and some wouldn’t. The same was true for OTC stuff. I recall one purchase where a wrist brace was covered but some Pepto I bought wasn’t. There are a number of strange holes in how medical expenses work that you might not ever have to see if you aren’t shopping to curb a disability. This is because the  common consumer with typical health might never need to buy some of the things a disabled person finds themselves needing to buy and as a result never see that strange grey area of medical expenses or only skirt it at best.

Now of course you have to address the true elephant in the room when it comes to medical expenses. How about those doctors? Well when it comes to doctors a typical person might rack up mainly general practitioner and maybe a few ER visits  and whatever you do for dentistry.But with disabilities come specialists and with specialists come travel expenses,higher costs for office visits,more expensive testing that needs ordered and even hours that aren’t hours. If you’ve never been to a psychiatrist you might not know that a psychiatric hour can cost anywhere from $75 to well over $100 and it’s actually only 45 minutes. This is to account for the time it takes the doctor to document the appointment before the next hour. Mental health appointments are usually crammed in to where the providers literally don’t have an extra moment for a patient because of how tightly booked they are but despite that….you’re paying for a 45 minute hour.

But there’s a lot of specialists you may never know even exist unless you’re disabled. I can recall more than a few times where I found myself thinking “There’s a doctor for that?” long before being baffled by the price for the office visit. But when you’re disabled you spend a lot of time in and out of medical offices,getting blood drawn to find levels of this or that,and maybe even seeing another specialist to do a test for the first one. I could build a very weird looking and unstable house if I still had every x-ray,assorted scan, and blood test result sheet I’ve had in my time. I may have even killed a forest with my blood tests alone. There are also a fair number of treatments you may never need if you are a non-disabled person. I often baffled people with the fact an IV iron infusion costs over $200 for one and you typically need a set of 3-5 at a time if that’s something you’re stuck with. The infusions are actually done alongside chemo and in comparison to the 5+ hours for that are only 2-3 hours  tops. If you’re disabled this sort of overexposure to medical treatment and doctor visits becomes very common for you and like medications that cost can add up and my not always be covered by insurance. It doesn’t even touch on the amount of time you lose but that unfortunately cannot be translated into dollars or compensated for in a lot of cases.

Impulse Debt

Now when I say impulse here I don’t mean the kind of impulse like you had extra dough and wanted to buy yourself a gift. I mean impulse as in financial woes you create as a result of a disability. While it doesn’t excuse all cases of things like gambling and impulse buys, a good number of mental disabilities can actually cause what is called impulse spending. This is basically uncontrolled and sometimes not even consciously done wasting of money. For some it can translate to something as severe as impulse gambling and for some it’s doing more than window shopping on amazon and getting a box of regret 2 days later taped with a prime sticker.

Impulse debt affects a staggering number of disabled people and can often be out of their control. I personally have never had huge problems with it as I like to research purchases and compare products when I shop so I often ruminate too much before a purchase to actually impulse buy anything. When I do have an impulse to buy I curb it at a dollar store or try to buy something I can actually use. It gets rid of the urge in a generally harmless fashion. But some people in the thick of their mental illness make huge purchases and unintentionally create impulse debt more than a typical consumer might.  Part of this is the component that some disabilities also affect budgeting and comprehension so the person may simply not understand how to manage money or how money works. I know personally that being on the spectrum I have a hell of a time understanding budgeting. It’s not because I’m stupid but my mind just doesn’t process information the same so the relatively simple concept of a budget becomes a bit more complicated once the information is rolling around in my brain.

I’ve actually been really pleased with the number of services arising that are just for teaching money management to those with disabilities so I think things like that mean people are gaining a better understanding of at least some aspects of life being different to approach for the disabled. It’s a good thing and I think it will really reduce disabled parties suffering from impulse debts in the future.

Differences in Getting out of/Managing Debt

Being in debt is a common ailment these days. But it might surprise you how much narrower the tunnel gets for help options when you’re disabled. There are a few key elements that cause that but the big one to focus on is income. A typical working person has steady income and probably an average credit score. This can eliminate most disabled people from qualifying for a traditional loan and a lot of other debt relief options  because they may have unsteady or no income and have probably suffered significant dings in their credit as a result of that. Another huge factor is that some loan companies prey on the disabled so if a disabled party does get a loan it’s very possible they’re getting scammed with higher interest or other unfair terms. Some loan companies will target parties who state something like SSDI or SSI as income because it’s a red flag they have a disabled party applying for that loan.

This situation is even worse when you’re between stages. If you’re a party like myself who is coming out of work and stuck in the loop of getting approved you have no chance of a loan because you technically have no income.

But you might think that’s what public assistance for. You’d be very wrong. Most public assistance such as welfare,food stamps etc go by household income so even if you have no income if anyone in your household has it and it goes above the very low and unforgiving threshold you won’t qualify. People in the sort of limbo between work difficulty and Disability exist in a strange sort of gap where they often can’t benefit from public assistance but still have bills to pay and expenses. But since you technically have no income and can’t guarantee the SSDI determination you also can’t get a loan.

But what about family and friends? Most debt relief places I visited suggested you should go to family and friends to help you stay afloat in this time. They are very wrong. This is a horrible idea. This is also where the article will get messy and touchy so if you’re overly sensitive or planning on chewing me out this will be why. But back to family and friend support anyways at the risk of being disliked more than usual. Please keep in mind I’m not talking out of my ass. I’ve been on this ride and bought the t-shirt but also take it with a grain of salt because it is still ultimately an opinion. It might work out but it means you have to be confident enough to ask for the help and have an understanding support network that won’t look down on you for doing so. Disclosing a disability is a hard thing to do and if approaching your personal contacts fails it can leave a very nasty scar. It might not be worth opening the wound if you don’t completely trust your loved ones or they’ve shown signs of not being fully supportive or understanding of your condition.

If you’re 150% sure your family and friends will band together and line up to give you hugs and money go for it but if it’s a touchy subject your family might be ashamed of avoid it at all costs. You’ll get zero support and a lot of pain while opening a huge can of worms. If you can do it and you’ve exhausted options you can try charitable crowdfunding. It’s a little bit like a Kickstarter but it’s for a charitable cause. A lot of people are decent and will help a person in need without judging. It’s definitely something you can’t discount and I think it’s reflective that crowdfunding has a lot of positive aspects to it. It also means that if you do in fact have a lack of personal support network around you a kind stranger might come through for you just a bit more in that situation than the people immediately around you or in your community who won’t step up to help in your time of need.

Churches and spiritual organizations are also listed as an option for support on a lot of sites I looked at. Avoid it at all costs. People from churches are just as human as every other person around you and are subject to the same flaws getting your pleas for financial help rejected at other junctions. Human behavior in the catholic church is at times no better than you’d find in a high school drama to be quite honest. People are still just as petty,just as self-preserving ,and just as judgmental as they are anywhere else. Saying your group is compassionate doesn’t always translate into action and that’s a sad realization I’ve recently made. In fact a lot of my spiritual but not religious contacts have repeatedly shown deeper compassion than people from churches and church organizations I’ve dealt with. I have a friend who is an atheist who is genuinely nicer and usually far more concerned about my well being than some people I’ve met in my parish.

The church is a business at the end of the day so making them out to be anything beyond that is a stretch. It’s a business full of human beings. God is not going to help you pay bills or put food on your table no matter how hard you want it to be true. When we think in realistic and not idealistic terms, a spiritual organization is nothing but a business pretending God is their CEO so you can’t see how very human they are.

I don’t mean that in a bad way exactly but more to the tune of being rational and real. Churches are made up of humans and humans are often victims to human emotions and judging you just as hard as someone from a loan agency. When it comes to money and the facts a church can only help you to a point and at their leisure with staying afloat and may still expect you to prove how disabled you are in the same sense as those you’re fighting for SSDI. It probably won’t get you any further than you were before and may actually be a sour experience in  the end.

So what’s a disabled person to do when they need a financial aid to float them through the hard times? Sadly, a lot of them just don’t. When you get into that rut of realizing how alone and helpless you are in your debt it’s a very natural thought process to go from there’s no hope to eliminating the debt by eliminating the person who racked it up. You might think that’s an extreme but keep in mind that for the disabled the world can be a lot scarier and smaller. You might not go jump off a bridge over debt because you have a much wider range of options and can depend on being employable at a job that gets you gainful employment but for a disabled person this isn’t always the case.

Your options run out very fast when you’re disabled and in a debt crisis the trip to hopelessness is a lot shorter and fearing the anxiety of a collector calling you three times a day again might be just enough to justify not waking up the next morning. This is a very sad but true reality when it comes to debt and since disabilities generate a good bit of debt it’s also hard to avoid being there at some point whether it’s from your impulse buys or constantly living out of medical offices.

In conclusion…

I think the areas of help truly open to those who are disabled and in a rut have a very long way to go but one of the reasons I wanted to write about it is because I don’t think people are aware it’s a problem that exists. Debt can be a very scary,overwhelming and often lonely situation for those with disabilities so if they reach out to you think about that and don’t shame them or look away.

The world is full of a lot of people who are crying out for help in a world that wants to make them invisible. That won’t change unless people look at the problem in the eye and step up to make changes in how we look at disabilities in America. Crippling debt is slowly burying a lot of disabled people who are trapped without help and often lose hope to the point of no return. It can be  hard for a typical person to fathom not having options but disabled people suffer quietly all the time because society has taken more and more away from them instead of giving them the help and support they desperately need. If you make people feel ashamed about asking for help enough times they’ll definitely stop asking for it and they may just stop completely.

We should be good to others for the sheer fact they are human beings with needs and feelings but being disabled comes with built in baggage. You already feel the weight of guilt,anxiety,depression,or shame out of the box but people turning you away when  you ask for help is just heaping onto that. If you know a disabled person going through troubles don’t shame them for it. Help them. You can help them monetarily but you can also see if they have questions about money matters and open the gates for that discussion. They might be afraid to ask and be able to find their own solution if you take time to give them solid advice.Just you being supportive and respectful in their time of need is a huge deal in itself. It always means something to me when people are willing to be real with me because sometimes being disabled can make you feel alone no matter how many people are in the room. Someone being genuinely concerned and meeting me at the right level means a lot.

Don’t be patronizing and don’t punish them for needing help because we all need help sometimes and no person should be afraid to reach out to those around them for assistance. I can tell you from experience it’s a painful and awful feeling to feel like you can’t ask family and friends for help. Take the time to look outside yourself and reach out to the person. But most of all treat them like a person. Disabilities aside, we’re all human at the end of the day and that’s something that people seem to forget these days in our society.

Treating people better should be a priority no matter what walk of life we come from and debt is something we all face but the way it hurts the disabled is a huge issue. My hope is that being up front and honest will make you aware but also make you think a little in general. Help the people around you and just be good to them. Remember that even if a person has a disability they are still human and their problems matter just as much as yours as a working and healthy person. In general, don’t look down. Look me in the eye.

Most disabled people understand how scary it is to open up a line of discussion about what’s going on in our lives. People tend to either tiptoe or patronize but all you have to do is be open-minded,respectful,and honest. Be part of a change where we engage each other instead of judging and shunning. It might be kind of scary but so are a lot of things and when you open that line of communication and truly want to support the disabled people in your lives or your community it will be the first steps to people understanding each other more and getting along better. It doesn’t even just have to be about debt because truthfully we have a lot more in common than you might think and a lot of disabled people while having to acknowledge in some degree the things that make them different really just want you to treat them like people.

 

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