Is it right that we’re forced to bumble along?
The hidden costs of disability
By Jacki Andre
If you’re reading this, you already know that having a disability is expensive. But able-bodied people often don’t “get” it. Either they don’t realize the additional expenses that people with disabilities incur, or they assume that our disability-related needs are fully covered by our provincial health plans or by personal health insurance.
Some disabilities require costly equipment. My friend Heather uses a manual wheelchair. When she purchased it three years ago, it cost $6,000. The same chair today has a price tag of almost $9,000. You can buy a brand new car for a comparable price! Heather would love to purchase a push-assist chair, which would make travelling up gradients and over carpet easier. But with a price tag of $10,000–14,000, these chairs are well out of her reach. They are also out of reach for a lot of other people who need them.
A drop in the ocean
Hearing aids are also costly. The type of aids I need cost about $3,000. Each. I’m fortunate to have a good job with a solid health benefits plan. But, believe it or not, my plan will reimburse only a maximum of $500—once every three years—on hearing aid purchases. That’s a drop in the ocean on my $6,000 expense, which I simply can’t afford. And since I can bumble along without them, that’s what I do.
Some expenditures are absolutely necessary. You just can’t make do without a wheelchair or go day to day without ostomy supplies, if you need them. Someone living with diabetes, for example, can’t manage without insulin, blood-test strips, syringes, glucose tabs, urine-test strips and a glucose meter (although, thankfully, glucose meters are sometimes free when you buy the blood-test strips). All of these supplies (with the exception of the glucose meter) need to be purchased on an ongoing basis. Blood-test strips alone cost $100 for 100 strips—and given the number of daily tests required, a package of 100 strips should last about 20 days.
People also need at least a couple of pairs of shoes. A friend who requires custom orthopedic footwear tells me that a pair of basic shoes costs about $600, while boots cost about double that. She too has a good employer benefit plan, but she expresses frustration at always needing to justify her purchases—and at needing to pay out of pocket while waiting for partial reimbursement. She very rightly points out that even if you have a benefit plan or private insurance, you still need to have the available cash to purchase things up front.
Don’t discount comfort
There are other things that people with disabilities rely on, even though they might not be necessary to everyday life. But they make our lives easier, more comfortable or safer. In addition, when we are in a place of pain, discomfort or fear, it becomes more difficult for us to contribute meaningfully to our families and communities. By the way, don’t discount comfort; it’s important to daily life. If we can’t sleep comfortably horizontally, we might turn to relatively cheap aids such as wedge or roll pillows or, if we can, splash out on an adjustable bed. If we feel cold all the time, we might turn up our furnaces and dread opening our energy bills. If our bodies don’t absorb nutrients well, it helps to purchase products such as Vitamixes, masticating juicers or food processors. If we have dexterity issues, dictation software such as Dragon NaturallySpeaking can save a tremendous amount of time over needing to painstakingly peck out each letter on a keyboard.
As anyone with a disability knows, costs extend beyond those that directly impact our bodies. My friend Kate, for instance, is a single 40-something homeowner and pet guardian. She needs regular or occasional help with home repairs, pet care, yard care, housekeeping and cooking. While some of her expenses might be lessened in a rental unit, Kate doesn’t feel like moving is an option, given her limited energy levels. And while you might think having a pet can seem like an unnecessary expense for a person with a disability, it’s been proven in study after study that pets are beneficial to our physical, psychological and emotional health. And let’s face it—when an individual’s health and happiness are boosted, everyone benefits.
As people with disabilities, we often choose less expensive options. This is sometimes due to simply not having enough money and sometimes due to our guilt over spending so much of our family’s budget on disability-related supports. We also pay out of pocket for over-the-counter medications such as painkillers; vitamins and supplements; tensor bandages and support stockings; and alternative treatments such as osteopathy, massage, acupuncture, chiropractic therapy or essential oils.
As I said earlier, I have a good job with a decent benefits plan and I still can’t afford all of the supports that my disability requires. What happens when a person with a disability has a part-time job without benefits or has no job at all? Do government income-assistance programs step in to cover the costs of all their needed supports? The answer is no. When the provincial government in my home province recently proposed clawbacks to the Saskatchewan Assured Income for Disability (SAID) program, there was a loud public outcry. Much of that outcry revolved around the fact that the existing programs do not meet people’s basic needs as is, and clawing back the rates would only make vulnerable people more vulnerable. If people can’t afford healthy food or suitable housing, how are they going to afford a Vitamix or therapeutic massage to keep themselves healthy and out of the emergency department?
Having a disability is costly. Finding the money to pay for disability-related needs is often a struggle. When we look at the big picture, what is truly the better long-term financial option? Which is the more compassionate and ethical choice? And then: How do we make it happen?
Jacki Andre works with Disability Services for Students at the University of Saskatchewan and also writes for various publications including the Huffington Post (Canada). As a person with a disability, she is passionate about disability rights and accessibility issues.