In 1995, my 14-month-old son Adam was diagnosed with spinal muscular atrophy, type 2.
At the time, my husband and I both worked full time. David was an electronics technician, and I worked in a discount store until I found the teaching position I'd trained for in college. We didn't make a huge salary, just enough to cover our basic expenses with a little left over for extras.
The trap closes
|The Sullivan family|
When Adam's condition began to require medical equipment we were advised to apply for SSI (Supplemental Security Income). I filled out the paperwork, only to be told that we made $50 a month too much to qualify. The SSI representative told me to come back if I lost my job or had another child.
Thus began the challenge of life in the "middle-class trap."
The middle-class trap is my term for making too much money to get assistance with medical necessities, yet not making enough money to pay for these pricey items without hardship.
People ask me, "Well, don't you have insurance?"
Yes, we do have insurance! But insurance pays for only 90 percent of durable medical equipment. It doesn't take a math genius to figure out that 10 percent can be a huge amount when you consider the cost of this equipment. And Adam's needs go far beyond "medical equipment."
Let's consider a very basic item my son's disability necessitates: a wheelchair. Adam uses an Action Ranger X power chair that we purchased when he was 5 years old. When we bought the wheelchair four years ago the cost was a staggering $14,000. I could have bought a new car for the same price.
Insurance paid 90 percent, leaving us to find $1,400. The Muscular Dystrophy Association then provided $1,000 toward the purchase of the wheelchair. (MDA now allows a maximum of $2,000 every three years toward a wheelchair purchase for clients under age 18, and every five years for those over 18.)
Even with the help from MDA we were left with around $400 to pay. Now, $400 may not seem like much, but it stretched our limits. Our families were able to contribute the rest of the needed funds.
But that was only the beginning. Our next problem was how to transport a power wheelchair that weighed almost 300 pounds.
The more we struggle...
We had to trade our car for a minivan. Insurance won't cover the cost of a vehicle, though it certainly was a necessity from our point of view. A fully modified accessible van costs about $40,000, and that was out of the question. Our 1,800-square-foot home had only cost $41,500!
We decided to get a used minivan. Ironically, at $11,000, the van cost less than the wheelchair it was transporting. The next step was to find a way to modify the vehicle to fit our needs.
We looked into several mechanisms to load our son's chair into the van. A mechanical arm that lifted the chair and swung it into the van would cost a hefty $4,000, including installation. A lift that would lower to ground level and raise the chair cost even more.
We were horrified to discover that insurance wouldn't pay for any type of lift or even a simple ramp. It was considered a convenience item! To this day, I have yet to comprehend how a ramp is considered a convenience.
We checked with a variety of companies to find a ramp that was affordable and lightweight enough for me to use by myself. Initially we purchased a set of tracks (at $508) that led from the ground into the van's side door and could be removed after Adam drove into the van.
This proved a huge problem. The tracks were difficult to line up and Adam had a hard time using them. We quickly went through three sets of front casters for the wheels on his chair. My son would clip the edges of the tracks and cut his casters to pieces.
The company allowed us to exchange the tracks and apply the purchase price toward the cost of a foldout ramp that worked better for us. The new ramp was $949.
We also had to buy a tie-down system to hold the chair in place inside the van. That was $236. The total cost — after we bought the vanv — to be able to transport our son's wheelchair was $1,185. Not one dollar was covered by insurance.
In 2002, we had to replace our van after putting 150,000-plus miles on it. We'd prayed that our van would last until we could afford another. Our prayer was answered when we received an inheritance that was just large enough to cover the cost of a used van, ramp and tie-down system.
...the tighter it gets
In addition to these basic expenses, there have been many others.
In 1997, David was transferred to Chicago and we moved from our small town in Southern Illinois to the Chicago suburb of Carol Stream. We found a ranch-style house that we could modify to fit our needs.
First, we had to make ramps so that Adam could enter the house. Since it was winter, we made do with temporary ramps. That summer, David and one of our friends designed and built a permanent ramp. The wood and materials cost around $500 — expensive enough, but much less than hiring a contractor to do the work. Only David's skills made the ramp affordable.
This year has been especially expensive for us owing to Adam's medical needs. Just when we needed the income the most I had to leave my career as a teacher to be with him full time. Adam spent 32 days in the hospital, most of them in intensive care. His hospital bill was over $80,000. Our insurance covered a huge portion of the bill, but we still have several thousand dollars to pay.
We've also had Adam's wheelchair modified to accommodate his growth. Those changes cost over $5,000. Even with those changes, we'll have to replace his chair within a year or two.
We need to remodel Adam's bathroom; the doorway is too small to accommodate his chair. Until we can afford these changes, we carry him back and forth.
We've made inexpensive changes that allow him to use his bathroom. The toilet was modified with a $12.99 potty seat with handles. It gives him a place to hold on to and is easily removable. We also bought a child's plastic lawn chair for $2.99 to use in the shower. As Adam, now 9, gets older and bigger, these items will have to be replaced with expensive modifications, but for now they work just fine.
Watching our step
Having a disabled child is expensive.
My husband's salary has risen, which helps to make up for the loss of my income. We still don't qualify for SSI, but we expect to get some help from the state's Department of Specialized Services for Children.
I use my insurance's annual deductible to my advantage. If covered equipment can be purchased after that has been met, it costs less. I also use our income tax refund for equipment.
I look for creative, inexpensive solutions to expensive problems. When that doesn't work, we do without until we can afford to buy the necessities.
There's a lot of equipment out there to make life easier for people with disabilities and their families, but for us it's the stuff dreams are made on. Its high cost makes much of it almost impossible for the trapped middle-class family to afford.